RoseCampbell

I can understand how a mind numbing job would eat away and be more stressful. With frequent (chronic?) pain, one must have something to occupy one's mind with to keep pushing through. Otherwise, mush. Nausea is rotten. So sorry! Try tempting yourself with a little something sweet. Sometimes, that his enough to make it possible to get down a decent meal. Then be sure to rest for at least 1-2 hours to keep it down. Have you heard of ketones? If you don't get in enough protein and carbohydrates, your body starts to eat reserves, then, it spills ketones. It make you feel extra flu-ish. Baby yourself, take extra care! Thinking of you--

I'm so sorry for all you are going through. Throwing this out there just in case: Have you heard of POTS? Some of the symptoms (nausea, low BP, intense head ache) you describe make me wonder if perhaps it is something you're experiencing. If you want info on the "poor man's tilt table" test, please let me know. A positive response to the poor man's is a pretty good indicator of having POTS.Or, you can Google it. It is easy to do on your own. Best wishes. I'm sorry you are suffering. I hope some relief finds its way to you soon.

I get the same thing during cluster times. My clusters also started way, way, way before the arm shoulder neck thing. For me, the clusters are more the cause of the tension, not the result. Working those muscles would and does help reduce frequency from the Clusters specifically kicked off by muscle tension, but it isn't a flat out cure. I've been working on and with my muscles/muscle health for 15 years.

Constant head pain + financial woes. It's a craptastic combo. Wishing the best for you, or at the least, less of the worst.

Oops! Ignore that. Pasted into the wrong page.

https://www.ncbi.nlm.nih.gov/pubmed/28857152

What a horrendous year, I'm so sorry for all you and you're friend are going through. As a person with a disability from illness who knows how rare it is for people to stick around, I must say: YOU ARE AWESOME!! What a humongous blessing you must be to your dear friend. I'm sorry about your car! Boo! We traded in my convertible mustang for an old police car for very similar reasons. Very pretty car, to car painted with spray paint. I feel your pain. Migraines are hideously exhausting when they are daily like that. If your migraines are mostly one-sided; Have you tried a trial of Indomethacin just in case it is more than migraines? It is believed anyone with chronic migraine should try Indomethacin, but so few neurologists actually do. My multi year chronic migraine turned out to be HC, which is diagnosed by and treated with Indomethacin. My hubby also just had to take a huge pay-cut. It is so tough! I'm sorry you've been through such a financially difficult time, and still will be pinched even with the new job. I hope it turns out to be enjoyable, less stressful, or at least full of great people. Sending feelie-better vibes.

Thank you, I appreciate it! & Thank you for sharing that! I hope it does end up being helpful.

Oh! I also have lupus, sjogrens, POTS, Fibromyalgia, and many other tag-a long s, so I've kept my comments about my experiences limited to those I absolutely know are common for HC sufferers.

He called the welding company to ask if they also did medical, or knew where else we could get medical oxygen. We'll probably go the welder's route. Or, since I can sort of get away with such a low flow rate, I may try a machine. First here with both? I'm surprised, although my Neuro did say I was "interesting" . I'd be happy to answer questions. You guys have been a huge help for me over the years. Both HC and CH are one sided, wrenching/stabbing sort of pain. CH has more intense blinding flashes of kill me now. HC is more relentless deep writhing ache. Both have autonomic involvement. CH is much more accute than HC, the pain comes on faster and is much more intense, then leaves faster. However, it often irritates the HC and kicks off a killer HC flare. After a few rounds of CH battles, my head is pretty painful and the HC becomes almost as painful as a nonstop CH attack. HC is daily pain, with periods of worsening and lessening intensity, but it never ever goes all the way away. Pain is typically 3-8.5 on pain scale, with a steady 9 on CH days between CH attacks. Just as CH often have cycles, HC often has periods of flares. Flares can last a day to weeks to months with an intensity of 9 in the evenings, often lower, starting around level 5, in the early part of the day then creeping up as the day continues. There are also periods throughout the day where pain may become extrememly intense. Currently, I have no way to differentiate between those moments and CH attacks. If I'm in a HC flare, I just assume it's HC. If it keeps going and I get desperate, I try oxygen. The only way I've been able to truly differentiate between the two in the beginning is by using the meds to help differentiate-- indomethacin for HC, Sumatriptan and oxygen for CH. Sumatriptan and Oxygen do nothing for HC, indomethacin at the proper HC dose does nothing for CH. HC also comes with several other odd symptoms, like shoulder, neck, back, upper arm, and chest pain. HC is also more like a migraine in sensitivity to light, sound, smells, and temperature. Stress brings on HC, the relief of stress brings on CH. Weather changes, hormonal changes, heat/humidity can also bring on a HC flare. Strenuous exercise/exertion brings on a flare. HC has many additional flares, but these are the ones I've noticed being among the most common for all HC sufferers. Vomiting is common. As are: blurred vision, confusion, chronic stupids... This study explains HC symptoms well and why Indomethacin is the criteria for diagnosis. http://www.scielo.br/scielo.php?pid=S0034-70942012000200004&script=sci_arttext&tlng=en There are people out there who believe they have HC, but don't respond to Indo. In my experience from HC groups, those people typically don't have the "typical" experience of HC sufferers. I would think they should keep looking for a diagnosis that better fits their needs--of course, that isn't often possible.

Thank you for all the information, Batch! Many of those I was doing, or tried, plenty I haven't yet tried. Thank you! I am such an idiot! I forgot that last month, I'd moved down to 5 to see how little I could get away with using--not because it was the only level I could handle with the higher levels making me vomit. Idiot that I am, I only remembered the vomiting and unsuccessful oxygen times, and entirely forgot that I'd set it so low just to see. Good grief...The times I'd vomited from using the 15 flow rate were times I was having HC (hemicrania continua) attacks at the same time as the clusters. HC makes me vomit, and makes the breathing techniques as described so well by Batch nearly impossible. I'm on meds for HC now, with it 75% under control. My clusters today were HC free, so I was able to use the oxygen without any of the problems I'd experienced before. Thank you so much for the tips! I just got the bill for my oxygen today, it is a seriously dishonest company with a total monopoly (or so we though) they flat out wouldn't tell us how much it would cost before running it through our insurance first. (Last time I needed something from them, I fought with them for hours trying to get an out of pocket cost, they refused. I didn't bother fighting this time.) It is completely un-affordable for us. I'm so angry. Plus: They implied we'd be billed per tank of oxygen (by saying: we can't say how much it will cost because that will depend on how much you use, etc.) , but we just found they go by a flippin' flat rate. No matter how much I use, the price is the same per month. So, all my effort to try to use as little as possible only helped their bottom line. No wonder why they were so "helpful" suggesting I try to restrict use as much as possible. Supposedly, in our area, Norco is the only place we can get medical supplies from, but after calling a welding company, my husband was given information of another company that actually does offer medical oxygen. They're working on giving us estimates now, including an estimate for tank purchase and refill (something Norco refuses to allow--flat rate rentals only). I knew oxygen would be spendy, but I didn't realize how spendy.

Thank you for the tips! Sorry for the jumbly post--my brain is mush from a HC flare. I do use caffeine and find it helps. I'll try the bigger bag idea, thank you for the link! I've been waiting to buy the clusterbuster mask that has the mouthpiece option. Thank you for sharing your experience, Dallas Denny, I'll move it higher up my priority list.

Hello all, after 25+years of clusters (22 years after first diagnosed) with almost no medical help, I've finally found a great doctor who prescribed oxygen for my clusters. I'm set up with a non re-breather, 15L flow rate valve, and massive tank. My question is, I can't breathe fast enough for the 15 rate to do much more than blow in my face. I have learned to breathe slowly and go into a deep meditative state during attacks. When I tried to breathe faster, I just ended up with my head spinning and puking. I slowed the rate down to 5, at that, it fills the bag, then I breathe in the entire contents of the bag. It usually fills again before my next breath. For me, this works to lessen an attack and sometimes abort it after 15 minutes. Although it works, I have a (not so sneaky) sneaky suspicion that I could get faster/better relief by doing something or other differently. For those using a higher flow rate, are you actually able to breathe in all that air that fast? Or is that not the point? Even with the 15 rate, I was having to pull away from the mask for a deep breath every few minutes as the air in the bag wasn't enough to satisfy my lungs. The short fast little breaths I was getting through the bag were too short and too fast. At the lower flow rate, I'm better matching my natural RPM, but still having to pull away every so often for a full breath of air. I should mention, I'm tiny and using a peds mask as the adult mask was too huge. Is the problem likely that the bag on my peds mask is too small? I have a muriad of other health issues that cause my breathing to be naturally slow and shallow. I constantly set off the RPM alarms in the hospital. Usually 9-11 RPM Any advice would be greatly appreciated!