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  1. Just want to say a BIG THANK YOU to Bejeeber,Spiny,Freud,CHfather,Jon019,Dallas Denny,Xboss and Fun times I'm pain free got my sanity back feel like I've got my life back, got so many more tool to fight the beast when he decides to reappear. As I said I'd never spoke to any1 who has suffered with this s--t before I found you guys and this forum , THANKS again
    8 points
  2. Happy to see your post Shaun!! As I've said on many occasions here over the years, "One more cluster soul out of the darkness and into the light!" DD
    7 points
  3. Everyone has covered it pretty darn well Shaun. I find utter delight in helping one person become pain free. Each of them are special. And I consider them all friends. Stay safe, happy, and loving. Life will be great!
    6 points
  4. Yo CE...so glad you found us... talking, sharing, or just plain ranting with folks who understand and care can be incredible "medicine" all on its own......and then ya got spiny! kept reading that truly wonderful post to throw in something...but there weren't no room. Golden!! ...all i can say is that it makes me sad and frustrated that somewhere along the way there was no OXYGEN given. guess it goes along with the clueless misdiagnosis, but every medical reference i've ever seen (from the 80's on) acknowledged that O2 was THE recognized abort. safe, fast, easy once dialed in, ways of making it inexpensive, and none of the nasty side effects we all know so well with the migraine drugs thrown at us. may not work for all, but does for more of us than anything else...save maybe triptans. you've never been given, Imitrex (sumatriptan), Zomig...or any other triptan..or they didn't work? i'm shocked. OXYGEN can be a game changer...saved my sanity, perhaps my life. That should be your first step.... best jonathan
    6 points
  5. Yes, the usual amazing post from spiny. Like her, I have to ask -- Only Emgality? That would be very unsatisfactory. The Emgality might work, but there are strategies to get you out of pain now. And regarding that Emgality prescription, it is for 300mg? That's what is needed for CH. Even with a migraine diagnosis, you should have been prescribed Verapamil and some kind of triptan (perhaps the injectable form, Imitrex, but maybe tablets or a nasal spray). Did none of that help you? spiny has covered it all so well that there's not a lot to add, but this post might have something useful for you to know: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
    6 points
  6. So sorry to hear you are struggling. Sounds like you are going to need a fusion which are highly successful procedures in most cases. Will likely lose some range of motion but the pain will be gone so it seems like a far trade. Spinal surgery is not for sissies and since you are anything but a sissy you will do well. Make sure you have someone who has been at it a long time, has a good volume of experience with the procedure and is nice to your wife. Stay strong.
    6 points
  7. First of all, the "pain in my head constantly" may be what we refer to as a "shadow." Clusters are referred to as the Beast. Makes sense, huh? As to your other point, I have to remind myself at bedtime that if I wake up and wonder am I having a cluster attack, I am, and I should get right on the oxygen. The abort is easier. There are some documents on this website under patient resources about how to make the most of your oxygen experience (doesn't that sound romantic!). Also, Four cycles in nine years is, as you point out, lucky. I used to be episodic, one episode a year for 6-12 weeks with headaches only every other night (sleep and alcohol are my triggers). Slowly over 41 years my cluster disease has progressed, and now I'm chronic with 3+ attacks every night year round. Lots of resources here, glad you found us. We are, I think for the most part, people for whom the medical world has not really made a place (although thanks to Clusterbusters and others that's getting better), and we are each our own guinea pig, experimenting to find remedies and prevention that work. All the best!
    6 points
  8. Here is one of my most happy places. This was Thanksgiving day or as @Bejeeber said ThanksBirthGiving day I was having her connect up with me prior to hoping on
    5 points
  9. Here's to wishing all you cluster heads a happy Thanksgiving! I sure hope all of you get to enjoy this day pain free.
    5 points
  10. I find putting a frozen bag of peas on my neck while using the O2 helps. Sometimes I'll put a second bag of peas on my head. I'm sure the whole scene looks rather chic to the untrained observer
    5 points
  11. ....so glad ya found us, so glad a place like this exists...we are standing on the shoulders of giants here at CB...and i look forward to the time when we can talk about the "old days" when CH was still a thing.... and now is a usta be....
    5 points
  12. I am glad you found this site, there are great people on here that will help you out a ton. Your headaches sound a lot like mine. I have clusters and migraines which I have been told is rare, lucky me! I can not take imitrex as it makes my headaches worse, but I can take Zomig and it works wonders. Be careful there is a rabbit hole that comes with triptans that can send you into rebound headaches that will not go away unless you stop taking them and suffer through a few days. Prednisone is a life saver but you have to be careful with how long you are on it as it is bad for bones and liniments. O2 is great also if you cant get a prescription and a high flow O2 regulator rent a oxygen bottle from a welding supply and get a welding regulator.
    5 points
  13. I had horrible neck pain some years ago. Every day a misery, wearing a cervical collar all day, unable to do anything comfortably. I was in the hospital for a week just because I was going nuts from the stress. The first day I was there a doc came in and said he had looked at my MRI and he was ready to do surgery whenever I wanted (fecking ambulance chaser). Nothing they gave me, even morphine or steroids, helped at all, and when they kicked me out they gave me giant bottles of things to take daily (neurontin, oxycontin, oxyIR . . . ). I flushed them down the toilet on the third day (too bad -- street value was probably pretty high). It happened that we had a connection with a top neurosurgeon, and I counted the days until my appointment with him, thinking he surely was going to rush me into surgery and finally fix the pain. Instead, he said to come back in two months after doing physical therapy regularly. I was crushed. I wanted it over, and I was terrified of doing anything to make it worse. Turned out that waiting was the right thing to do, and I never did need that surgery (and I never miss a day of doing my neck exercises). There are those famous studies where they would look at people's spines and try to predict who was having back pain. Turned out that except in extreme cases there was no connection between spinal condition and back pain. One person could have three herniated disks and be suffering, and another person could have something that looked just the same and be having no pain. And the other way around -- no structural issues but serious pain for some and no pain for others. So maybe, like me, you were just having some kind of awful episode and it's going to get back to normal or normalish and just become a memory. Or, of course, maybe not, but it sounds like they're ready for you if surgery is what you need. Love you, Denny, and sorry you're going through this now, too.
    5 points
  14. Welcome to the community cursed . So glad you found us . But also sorry you had to . Spinny has given you a great intro to this forum as she always does . She is 1 great woman . lits alot to take in but you need everything you can get to beat the beast . The people on here are great they will give you great advice and support , and their is always some1 here willing to listen whenever you need to ket off a little
    5 points
  15. Hi Cursed and welcome! I'm delighted that you found us and very quickly too. Yes, the pain is brutal and you will now have much better methods to treat/deal with it. And you did find US ASAP!! I had to take my husband with me on my second trip to the Neuro to get him off the 'Migraine Train'! Ease up on yourself Cursed! We, as women, have to fight much harder and longer for a correct diagnosis. I had been on carbamazepine for a decade then too and I had to fight for that! When I finally got a diagnosis from a doctor, I had had CH for about 30 years. When mine first started in the early 70's, I had every test done that they could think of because 'women don't get CH!' Funny that the meds I was given were common for CH and seizures back then. Well, yes, we do and the balance is shifting to almost 50/50 male to female now. But you still have to beat the doctors over the head at times. Glare...... Did he prescribe O2 at 15 to 25 lpm via a non-rebreather mask? That is your first line of defense against this beast we live with. And any headache specialist knows this! That comes before Emgality. Is he pushing you to just take the shot as your first line of defense with nothing else? Are you Chronic or Episodic? Why did he say 'atypical'???? What was his explanation? Apparently he did not give you a script for Verapamil or Prednisone either? Are you in cycle now, or are your hits year round, as in Chronic CH? I know that you are getting hit, just not what form of CH you have currently. Normally, a headache specialist will prescribe both meds. The Pred is used to bridge you till the Verap kicks in. Normally a Pred taper is what will get you pain free for starters and then the Verap kicks in to provide long term relief. The other script given is for pure O2, from a tank, not a concentrator, with a regulator that goes up to at least 15lpm. That is the thing that will kill a hit for you in minutes if used correctly. Since apparently you were mainly offered a shot, we can help you a lot with the pain and hopefully get your doc up to speed as well. Emgality works for some, but not all. But to only offer a shot is a concern in my book. Meanwhile, you are still in misery with no relief. I am shocked. At the first sign of a hit coming, perhaps heralded by a 'shadow' or mild form of a hit, ingest some caffeine - Energy drink or shot, coffee, V8 Energy all can be a huge help. Inhaling cold air helps many. Personally, I used a scalding hot shallow bath to sit in with a hit and just kept adding more hot water. I would take a room temp wet cloth to put on my head/face until the hit reached the point of 'don't touch!' Then, I just rocked till it left. Some prefer cold to hot, so you will have to see what is best for you. Additionally some just put their feet into hot water. The theory is that is dilates the blood vessels relieving pressure in your head. Others take an ice cube and put it ion the roof of their mouth on the CH side of the soft palate. Once you get the O2, you won't need the bath routine. It appears that you may be Nocturnal due to the time of this post, so some suggestions there: Sleep in a recliner with your head above your heart. You will wake sooner, with less pain and have more time to get the caffeine down. etc. Another trick is to inhale cold air: Outside air, AC vent, freezer all seem to help some people. Then, there is the D3 Regimen. Plain old vitamins that can do amazing stuff for Chers. They lower the pain level and slow the ramp up - both are great advantages to have. And for many, the vitamins can stop the cycles completely for a lot of people too. Learn you triggers! Alcohol is the main one that gets most of us. But there are many others that will bring on a hit, like MSG! Take a moment and read the blue banner at the top of the page: New Users............ There is a lot of information there that you will find valuable. Hugs and welcome to the group!!
    5 points
  16. Hi Ta, There is a plethora of info on this site specific to the D3 regimen. In the top search bar of the forum just type in D3 and be sure to follow the instructions from a user named Batch (handle XXX) there is more to making the D3 be effective than just taking the D3 (you need to take the co-factors). You never mentioned oxygen so I am unsure if you have a scrip or have tried it or not but many on here swear by it to abort. It works for me from time to time. There is a video on here that goes over the breathing techniques that seem to be effective with a non rebreather mask. I was able to get the intensity of attacks to be manageable without the triptans on the D3 reg. I so understand the frustration with folks mentioning migraine etc. I think a majority of us have gotten that response a time or 2..
    5 points
  17. Hi @Kprice, FWIW it looks like maybe some similar sumatriptan side effects are listed at mayoclinic: Less common changes in patterns and rhythms of speech confusion dizziness fast, slow, irregular, pounding, or racing heartbeat or pulse trouble breathing Rare lightheadedness, dizziness, or fainting severe numbness, especially on one side of the face or body trouble speaking or swallowing twitching weakness of the arms and legs And as @Dallas Denny mentioned, you may wanna revisit preventatives for consideration of something more consistently effective. For many of us that includes busting, as seen at the "New Users - Read Here First" blue bar above^^^^^^
    5 points
  18. I wonder if she got to burn one down with John? Oh hell yeah, ya know she did..lol!!
    5 points
  19. OH WOW !! I woke up to a blinding CH/KIP10 this morning and thought fuck it, before any abortive or other techniques I will run try the HOT WATER TECHNIQUE. Stood in a bucket of hot water for 5 minutes approx, to just below the ankles, and went from a KIP10 to KIP5 within a few minutes. GREAT !! THANKS A BUNCH, great for instantly lowering blood pressure>..... however KIP 5/ Nasty eye pulling shadow is persisting for some hours now since the hot water, but I can manage to function somewhat with KIP5. Thank you CHF for those interesting treatments / Will definitely be trying that again .....
    5 points
  20. Sage. Advice. Whoa - Happy ThanksBirthGivingDay, or however such a dual event is negotiated @BoscoPiko !
    4 points
  21. Hi all, as you know I’ve had no luck finding a doc in FL to continue the ketamine I was in as an abortive before I moved here. A kind family member has offered to pay for me to try infusions, as it is all the rage here and the centers are everywhere. Yesterday was my first infusion. I was exhausted going into the infusion and fell asleep just as it started. They started me on “high dose protocol” 2mg/kg (limit is 4.5mg/kg). Fir my skinny ass that was 200mg over 45 min. 2x they gave me 10mg IV push bc she said I shouldn’t have been talking. Lol. This sent me into K hole land. Quite the experience (feels like you’re kind of outer body and part of the essence of existence if that makes any sense). I started to become more aware of the experience in the last 15 min as I got slammed w what would have been a kipp 10 and I had to pee like a race horse from the half a liter of fluid given w the infusion. I said to my mother who was sitting next to me “I think I’m getting whacked. The CRNA came in turned the lights on looked at me and said “wow you can really see it in your face, you look twisted, your eye is drooping and shut and it looks real painful!!!” She had a lidocaine soaked q tip for an SPG block ready and I put it all the way back to my SPG (I’ve had many and it’s not for the faint at heart to get it all the way back there). It didn’t abort the attack but I was still fairly effected by the infusion that just finished and I asked them to disconnect me so I could run to the bathroom. We left shortly after that, I was still getting hit but the pain was filled by the ketamine still in me. I’m guessing it was REM sleep that triggered the hit. Last night I got hit 2x after the infusion then my normal 5 hits every time I hit REM sleep. I’m going to try weekly infusions and see I if I get results. When I started at home Ketamine a year ago I was on a little over a gram a day. Now that was intra nasal and oral. Bioavailability is less than IV but the total amount of ketamine per day for days on end suppressed my CH to less hits per day, aborted the attacks, and my hits were now 45minish if I did nothing instead of my normal 3 hr hits. Since backing down to 600mg oral only a day my hits got bad again. Now without the at home K fir about a week now my hits are back to pre ketamine status... will keep y’all updated. Next infusion they will do 3mg/kg. She also added lidocaine and Mg to the infusion to see if it would help w the attacks.
    4 points
  22. Greetings from down South, sorry to hear about the situation with your husband. I fully agree with others that the D3 regimen is helpful, also melatonin often helps reduce nighttime attacks. I also agree that it's better to hit the oxygen earlier rather than later in the attack. Regarding the anxiety and driving everyone crazy and not wanting to work, I've been through that too. All I can say is that the sooner he can move to a place of acceptance, the better. There is currently no "cure," and hating the cycle and resisting the attacks makes it all worse. For me, when a cycle starts, I do go through my initial phase of denial ("Oh, maybe it's not a cycle, maybe just a random attack, it can happen..." "Oh it's just the air pressure, not an active cycle"), but once it becomes clear that it is indeed an active episode, I really try to accept it and tell myself I'll get through it. When an attack starts, as calmly as possible, I stop what I'm doing and go to the oxygen, assuming I'm home. While I'm on the oxygen, I try as hard as possible to clear my mind, almost as if I'm trying to meditate--not panicking is key. If I go out, I'm either prepared to abort whatever I'm doing and go immediately back home in a taxi, or I do take meds to lessen the severity if an attack does come. Although it's not without side effects, dihydroergotamine seems to work reasonably well for me in that respect, but I try not to use it more than 2-3 days per week. The other one I use isn't available in the US, unfortunately. I'm not a triptan fan, personally, but many people have good luck with them. I also do the MM busting protocol, which usually works to break the cycle, although not 100% of the time. He'll have to experiment and see what works for him, but acceptance and calm perseverance are key. Good luck!
    4 points
  23. I would add the Benadryl or Quercetin now. I don't see any reason to delay that. You are taking one or the other for inflammation. It helps a lot!!! Have you had your D levels checked yet? If so, what did the blood test show your level as being? A baseline is good to have. Then you can check again in a month to see how far up you have come. That will help determine how much you should be taking for loading. Are you taking all of the other co-factors? It takes a while to work, like a week or two for most. It should lower the pain level and slow the ramp-up time pretty quick. Both can be a huge help. And many have gotten pain free thanks to doing the Regimen! ATB!
    4 points
  24. .....yee-haw and sounds familiar....play with the flow to dial in. M-60 tanks doubled that abort #/tank.... and reduced visits to the O2 shop. though the E's are quite portable and easy to roll around in a cart. used to love me some the smell of a new mask....associated it with the GOOD that was happening...
    4 points
  25. *Update* I received my non rebreather mask in the mail and used it today at 10lpm and aborted an attack in about 12-15 minutes. Went through 1/4 of an E tank but small price to pay to abort one!!!
    4 points
  26. I feel your pain @Dallas Dennyand @CHfather I too have a bulging C5&6 as a result from my scar contracture and looking down through surgical loops 10+ hrs a day for years. I took a break from practice bc I couldn’t take the pain. I was referred to a really good spinal surgeon and he said it’s bad for my age but if I started w surgery now I’d regret it bc they need to be revised. So the later you start the better off you are. I finally got my burn scars revised and the bulging improved (I did do PT to no help). Sadly in between my 4 and 5 surgeries I got CCH. The neck pain improved. But now my scars need to be released again and I started getting neck and shoulder pain, numbness in fingers, dropping things... I asked for trigger point injections and it was the best decision I ever made!!! They do my neck and upper thoracic muscles that need it. First round helped some, but the next month I did it again and wala my pain and everything got markedly better!!! Now it’s my go to when it flares up. No more epidurals for me. I highly recommend trying it. They use a numbing agent of their choice and kenalog (steroid). I try and stay from the roids after @FunTimesand @Pebblesthecorgihad their hips done. I really avoid it. But for me the resolution of symptoms w 2 months of injections is worth it for me. I hope the pain is getting even better. Hopefully my experience helps you... Thinking of you buddy!!!
    4 points
  27. I used to have an eye twitch - don't recall whether it was the cluster side or if it started immediately following a cycle, but I know it was occurring at the same time as a bunch of other CH pharmaceutical after effects. I read about magnesium supplementation possibly being able to fix the twitch, and when I tried it, it did go away (coincidence or no?). Magnesium glycinate seems to be one of the most often favored and advised forms these days. On the down side, when the twitching subsides, people may miss the friendly gesture implying a degree of solidarity or intimacy they've grown accustomed to with you winking at them constantly.
    4 points
  28. It sounds, to me, like you have bad heavy shadows lasting 2-3 days with your clusters in between. As in you get a shadow and tells you an ice pick is coming. Then you get the cluster and it resolves, but not completely and you still have a heavy shadow. Caffeine and ginger (tea, pill, candy) are very good for shadows. O2 will also help. The 'ice pick' part you describe is the Cluster and fits the time frame. The pains in between are shadows and other nasty shite from CH. Like getting a Cluster knot on the back of your head or neck that hurts like the devil and puts you on notice that a hit is coming. I am shocked regarding the 'medical' treatment that you have received! Have you ever had an MRI? Anytime in the last 5 years have you had one? You need one! It rules out 'other' stuff and helps clarify your CH situation. CH will not show on an MRI. In my opinion and we all have one, your treatment is barbaric. 'We can get O2, but it will take a while. How about some shots in the mean time? And I will see you back in three months. I hope that you have a PCP that you trust and who will work with you. He/she can get you a MRI and give you a Pred taper for a week. Just to see if it kills the hits for a few days! They can also start you on Verapamil, but will most likely go with a low dose. You want short acting, not ER when you do get the Verap!! I'm going to skip down and read Jeebs post and go from there Cursed. You have truly been put through a ringer and not offered a stinking thing. Your rant is fine and don't apologize for expressing your pain or frustration. We do know it!!
    4 points
  29. Most people think that plug-in unit (a concentrator) is pretty ineffective, because it's less than 100% pure O2, since it uses room air to make the O2. Also, most concentrators don't go high enough in flow rate to effectively treat CH. A basic red bull would be sufficient. Many people find that the smaller energy shots, such as 5-Hour Energy, are preferable, in part because you can get them down quickly and in part because they actually have more caffeine than the larger Red Bull-type drinks. For more than a few people, a strong cup of coffee works, at least in the earlier stages of CH.
    4 points
  30. Most of us use M tanks. Huge cylinders. Get friendly w your delivery person. It goes a long way. I have always used Apria, tipped them randomly when I can and asked for their Cell #s. I txt them when I am running low and always get 3-5M tanks per refil. They have seen me get an attack and have had other CH patients. They knew about busting and have all become friends. I’m terrified since I moved and haven’t called them yet in my new location. Will call Monday as I’m out of ketamine and nursing my tanks. Ran through half a tank last night. I usually go through 1/2-1 big M tank a day. If I use E tanks one tank is good for 1-2 CH. at 25LPM. The mask and high flow will do wonders for stopping an attack...
    4 points
  31. Welcome to the community @CursedEyeball! Spiny has covered all the bases but I'll double down on her O2 and vitamin D3 anti inflammatory regimen recommendation!! Dallas Denny
    4 points
  32. Not at all... I don't claim to know even half of the info you've posted..I do believe you misread my post. Was just a simple question as I was curious due to the amount of info you seem to know about the disorder also I've never attempted busting to scared to try...
    4 points
  33. Agreeing with the advice and info you have received so far. D3 and oxygen are where you want to be. In the meantime, if you have any old Imitrex, it will probably still work, even from three years ago. But you ought to be splitting doses. See this file: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Once you get O2 set up, you will be using a lot less triptan. There are some things that work for some people when they don't have standard abortives. If you look in this file -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- under "Treatments without O2" (down toward the end), there a bunch of things to try, including energy drinks/shots (often works), voluntary "brain freeze," standing in superhot water (this seems to help a lot of people), and inhaling cold air from a home or car air conditioner. You might also try starting on some Benadryl (4 tablets/day, or what you can handle and still function), because allergies have been shown to have a big effect on CH. Also in that file, there's a long discussion of oxygen and maybe some other things you'd want to know. Busting is also something you want to have as an option. There's a summary of busting principles at the end of that file.
    4 points
  34. https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 This link will get you started on the D3 Regimen. It is the first one and what I follow mostly. You will find that 8k of D3 is insufficient. More is needed. Along with the co-factors. I use this year round for my CH. It works. ATB!!!
    4 points
  35. Agree with Jeebs on all counts (except insofar as those counts apply to me), and with Jon'. Just a reminder that welding oxygen can be used as the basis for an easy to set up, cost-effective O2 system. Lots of people with CH do it that way. You've already been exhorted about the difference O2 can make. Don't blame you for your misgivings about more meds. For those who don't know the brand names, Xyrem is sodium oxybate and Xyway is a low-sodium version of Xyrem. The study that Kprice mentions, on four folks with chronic CH, showed results that were pretty amazing -- 90 percent reduction in attacks for three of them, over an extended period, I think. There was a person here, with chronic CH, whose attacks stopped for quite a few months after taking Xyrem, but then started again. Maybe there's more about sodium oxybate over at clusterheadaches.com.
    4 points
  36. ...welcome....glad yur here, sorry you have to be....now, ...where's the OXYGEN?
    4 points
  37. If you can get off the triptans get some o2 if you haven't already and really look in to th D3 regime its help so many people with CH . I know it's easier said than done with the samitriptan . I was the same it was the only thing I had prescribe by my neurologist. It took the pain away within 5 to 10 mins so I thought it was a God send but when I look back all it did was made my cycles more intense and prolonged the cycle
    4 points
  38. .....^^^^^^^^^this is very good advice....i wish it wasn't so but i've lost count of how many times i've seen that hyperventilation is THE way to use O2. it MAY be the best (probably but not universally)... but it sure as hell aint the ONLY. i personally can't hyperventilate, but thru hard earned experience found that very slow deep in/out was extremely effective. may not get the max O2 in circulation in the minimal time, but it worked...it DID calm me the f down, and eliminated the adrenaline, overheating, agitation, anger, spastic movement, stress hormone reaction that are the hallmarks of a killer hit. mixed in, or after, i progressed to a very similar technique as described by Freud. my fear is the seemingly never ending reports from newer clusterheads that "oxygen doesn't work for me". well....maybe....and maybe it's just a particular technique that doesn't..... and you.need.to.keep.trying the various methods. ....there...rant over (afterall, aint that part of what CB is for?)...this ones a pet peeve...oxygen made all the difference in giving me a life....
    4 points
  39. For the hits that ramp up quickly and don’t respond quickly I have noticed as others have pointed out that technique plays a huge role. If you’re just getting hit and ramping up rapid shallow breathing is fine. But when the beast is raging it’s important to take big deep breaths and hold them for 5-10sec. Forceful exhale all the way, big deep breath, hold....repeat. That works for me most of the time for the stubborn hits.
    4 points
  40. My prayers and thoughts are with you! I pray you find a good surgeon and are alleviated of this problem all together. My heart goes out to you @Dallas Denny
    4 points
  41. Keep it together big man . You can face anything . You got this belive me . All my thought and prayers go out to you. I would say good luck but you don't need it as I belive you will get though this
    4 points
  42. We can't leave this legend out .me and the missus went on holiday to Jamaica in 2019 visited his home town 9 mile where he was born and know buried , got so stoned on the tour .We had a guide called captain crazy what a bloke so funny
    4 points
  43. 4 points
  44. One of my fav JP tunes with Bonnie Raitt
    4 points
  45. Being CHH does suck but like Jon said it is more like high and low cycles within it. I am stuck in a higher cycle at the moment and it really blows. Going through 02 tanks like they are goin out of style and due to some sort of oxygen shortage in this area I was just limited to what I can get refilled so a little added pressure and panic is starting to set in. Sticking with 02, 5hr drinks and Frankincense oil on the roof of my mouth and hopping that this ends soon. On the up side I do not have to sit around dreading any certain moth or time of year when the hits are going to start coming. I have the joy of knowing I am going to get hit in the side of the head with a brick every day!
    4 points
  46. Yes, yes, yes!!!! Great solution! I would definitely pursue that option. She can state that due to your condition and location, this is an imperative for you. Run the D3 Regimen past her and see what you get there too! Since she is aware and helping CHers now, I suspect that she will approve it, perhaps with some limitations. Being a woman, she definitely understands the need for calcium and D to prevent osteoporosis. Please show her the protocol and see what she thinks. It does have an amazing track record.
    4 points
  47. Thank you for all the input and motivation to pursue o2 again. I saw a new OB yesterday who had actually treated mothers with CH before! I was shocked to say the least and relieved about being understood. She agreed with increasing caffeine intake to mimic a steroid and suggesting visiting an ER during an attack for high flow oxygen too. I've only sought emergency help for CH that lasted longer than a few hours. I'm just not keen on an ER visit for relief when I will have another headache roll around in a matter of hours. Im in a rural area outside of Pittsburgh and there are drs. On the list on this website that I'm working on getting in to see but you guys are making me think maybe I can get my OB to prescribe o2 since they suggested it.
    4 points
  48. Thank you all so much for the recommendations. Just for an update, I saw a neurologist in Toronto a few weeks ago and got a prescription for E tanks (and my health insurance covered the full cost too!.) My attacks are much shorter now thanks to the oxygen and it gives me the hope to push through the pains. Thank you all again,
    4 points
  49. Aside from the Vitamin D protocol which has a similar success rate to busting, oxygen will be your best friend. It’s worth the money! Are you sure insurance won’t cover it? CMS approved it and insurance cos usually follow suit. Unless you’ve tried to get it in the last 6 months I’d try again. There is a trusted Dr list in the general board. May be one is close to you and you will get real help. Where are you located? My heart goes out to you. I couldn’t imagine how hard this is on you.
    4 points
  50. Hi mhowcroft! So happy that you found us. I must agree with the 'You need O2' statements above. I know that requiring O2 treatment for CH has been added to Medicare, so there may be hope in that area. Can you have your OB prescribe it and submit the request? Perhaps your insurance co. has also had to change their requirements for O2 needs. I do strongly suggest that you speak to the anesthesiologist regarding delivery! Epinephrine is well known for kicking off our heads and is usually in anesthesia. They need to know what this will do to you and formulate your meds accordingly. I have suffered my very worst CH post surgery and learned the hard way to tell them, not ask, tell! They should be able to accommodate your needs there. I sometimes wonder if the cycle set off post delivery is caused by the anesthesia as much as hormones? I had severe poison oak with my last one and was denied steroids too. Even though the mess was in my eye!!! It can be and is heartbreaking when they say 'NO!' Get your O2 set up now, either way that you have to do it. You will be grateful for the relief. Then utilize the 'non-busting' methods of treating your hits. Energy drinks, V8 Energy, or coffee. I highly doubt that it will keep you up. Feet in screaming hot water. Ginger tea or candy for 'shadows' - that lingering headache that drives us nuts on occasion. It can be a huge help. Read up, but I don't think it is contraindicated. And they abandoned the whole 'coffee during pregnancy is bad' a long time ago due to lack of fact. Besides, soon you won't be pregnant. I know that you will want to keep these internal additives to a minimum till you see how/if they affect your newborn. If you are getting nocturnal hits, then rest/sleep in a recliner with your heart above your head. You will wake sooner and be able to take action quickly if needed. Personally, I would investigate and not rely just on the dr. input. They can have limited knowledge in a lot of areas and just repeat a mantra to you that is not valid. All the best for you and your little one!!!
    4 points
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