spiny

That truly bites that they lied to you!! Fingers crossed that Dr B can recommend another doc who has 1/2 a brain and staff that does not lie. Arrgghhhh.

A nose cannula and 3lpm is not going to really help. You need the proper mask - non-rebreather - and proper flow - 15 to 25lpm - of pure O2 from a tank. You do not have COPD and essentially that is what you have been given - a treatment method to just supplement a 'little' extra O2 for bad lungs. Whole different animal. They are supplying you with the little tanks for a COPD patient to truck around when they go out and about! Glare.... You will need to ingest a lot of D3 to worry about toxicity. Most of us on the D3 Regimen, take 10k or more per day. You must take the co-factors with the regimen! They matter, a lot! https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 That is a link to the original regimen. It explains a lot for you. In the mean time you could try filling a trash bag - big kitchen can size - with O2. Then, exhale fully, then inhale deep - room air - about 5 times. Next, do the same with the O2 in your bag. Forceful exhale, then deep inhale, hold a bit and repeat. Use up what you put into the bag so you have no worries about excess O2 in a room. It does feed a fire quite nicely. How to fill it? Cut off one small corner at the bottom. Take a small soda bottle, plastic, and cut off the bottom. Tape that with the neck through the bag so that the opening is sticking out with the cap on it. Tape the whole top shut. Then, go to the bottom and cut a tiny bit of the corner off and tape your hose into the bag with the cannula removed. Now you can fill the bag with your O2 and take the big deep breath that you need. Cover the top while you hold and exhale to conserve your O2. If you type 'redneck bag' or similar in the search bar above,it might bring up a picture. I got stuck on the phone for hours and I see that many have already replied! But, I'll post this anyway.

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!!

Hi Acanderson! And welcome. It is advised to get a blood test to see where your D3 is currently. You can do this through your doctor or on your own in the States now. Lab Corp is one that will let you pay for a stab to see where your D3 currently stands. You want it to be over 80ng/ml. I tend to run at 100-110, which is fine. Toxicity is much higher. Some doctors can go a bit upset if your levels are on the high side, due to concerns over your PTH and Calcium getting out of whack. However, it has been shown that if those numbers are in the normal range, high D3 is not harming you. So, get a blood test, then begin loading with the D3 and the co-factors. After a month or six weeks, get another test. Then you will know how close you are to the level you need to maintain to keep the beast away. It can be truly amazing! Even if you do not go pain free the first year that you take the Regimen, your hits will be milder and the ramp up slower. Both are a good thing. More time to hit your O2 and caffeine and less pain all around! Very happy that you found us! Sorry that you needed to of course. Lots of great people here and we are an understanding bunch who want to help.

That is pretty cool xBoss!!!

Affective disorders suck. Also being stuck with one means that busting is not a good option, right Juss? And yet, it is thought that the lack of Serotonin is part of the cause of them along with CH!!! But those with a mild form, say SAD, can successfully bust. I suppose that means it adds up to low Serotonin can wreak havoc in many ways for many people. Additionally it bites for any CHer to have one with their CH!!!

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!!!

Hey Denny!! Tell the anesthesiologist NO Epinephrine in the meds that they give you!! Really serious here my friend! That can save your bacon in the head department. One surgery with epi caused ten hits. One colonoscopy with epi ended up with me getting a general to stop the pain writhing I was doing. Yep, woke with a hit too and the nurse had my O2 and mask in hand the instant I sat up. TELL THEM!!! My records reflect the epi bit now. Everywhere!!! And they also state that I will have O2 at 15lpm and a non-rebreather with it and do not try to make me lie down. Tell the doctor too. Hells bells, tell them all!!! My family have had many fusions - from neck (My Dad) to thorasic (My youngest) to lumbar ( eldest and me) and we have all done very well post surgery. You are getting all my good juju, prayers, vibs to go with as well.

And Enigma!!!! Along with some others on that album!

Some more current picking music. I do live in the land of Doc Watson after all!!!

Personally, I love Bill Withers. This is very short, but lovely in what it says.

One of my favorite Prine songs. Just catching up on all the music posts!!!

Happy Trails Freud!! I hope that FL is a lot better for you than anticipated!

Jeebs, cold and I will try to kill whatever is close by!! Hubs barely survived!!! Hot on the lower parts. As it cools. add more hot. By the end of the hit, it could be waist deep and I was a lobster!!! But, the hit was gone.

Copy video URL is what it says.

I clicked on the image and took the first selection below 'loop' and you see what posted. This was up, so I tried it.

Alan, that one has nice layers to it!!!

I agree Xboss. I enjoy techno a lot too. My youngest recommended Infected Mushroom to me today. Most genres of music are great, at the right time. I enjoy ATB and others from that era of Techno. Love the layers in the music.

Jon, isn't it awesome that her OB has had Chers before???? I am thrilled for mhowcroft!! And that the news is spreading in areas that desperately need it!!! Color me very happy! Far too many have had no support for many decades. As in been there, done that!!

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.

Too funny Xboss!! After you watch Acid Rain, a YouTube page pops up which includes a video on 'How to pick Liberty Caps'!!!! I enjoyed all three of the songs guys! The guitar was haunting and driving too Jon. The video to Anvil was pretty amazing Xboss! I look forward to additions to this thread!!!!

Kmel2, I am so delighted for you!! O2 can make life much better with CH. Now you have a top line abort method on hand!!

Here is the first early D3 Regimen protocol: https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 Batch's kids and grands are all taking the vitamins for general well being. I personally use this Regimen to prevent my clusters and have not had a full cycle in years thanks to it!! All healthy stuff.

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!!!

Hot water was my main 'go to' for some years!!! Glad that it helped you so much!!