spiny

Looks like a meet and greet group is forming!!! So glad that you are coming Jeff! Bring boat pics. Freud - We need to get the drinks to go. People don't even believe it is possible. Fun Times - The last time I drank during cycle was Christmas about five years ago. I took a sip of wine and shot out of the living room full of company like a rocket. Woke later huffing O2. Not sure why I don't remember it! But, I never tried that again. Insert chicken sounds here!

There's a great place in Shreveport where you can get a frozen margarita in the drive through and take it with you!!! They tape a straw over the hole in the lid and sell it as 'closed container'!!!!! We need a banner of drinks here.......... I am amazed they are still in business. I don't indulge when in cycle either! I can't take Trex, so that is not an option. I'll just cross my fingers and get there just fine. Or that is the mind set I plan to run with. Do all I can to make things go smoothly and then chill out. This will be my first flight in 15 years.

Freud, it has gotten interesting in the past from what I have heard! : Since I can get lost in an elevator with two doors, I will likely stay at the hotel! But good pizza would be appreciated. I have not been to Dallas since the sixties. Originally from Shreveport, just an hour away from there.I arrive at 1:45, assuming the plane is on time. So, I should be at the hotel buy 3pm or so. Really looking forward to meeting several people Assuming the beast stays away, a few cocktails would be nice too! I've not flown since CH decided to go over the top many years ago. So, that is a hurdle too. I would really love to celebrate the Equinox with few drinks assuming that I can get away with it!!! I checked with American and they told me that I could buy Starbucks and such post security and take that on the plane with me instead of relying on their lousy coffee. And I plan to tote an o2 concentrator on the plane to keep from being hit by the drop in pressure. Yes, I know that it may not or is likely not to work, but any security blanket in a storm, right?

I don't believe I would try this drug based on a reduction of 3.5 attacks/week. Good grief, it is amazing that they would even consider this successful! With 4 hits/day, I would gain by having only 3 hits for 3 out of seven nights. Not worth spending the money in my book. I suspect that someone with only one hit every other day would call it helpful. Unfortunately, many if not most do not fall into this category. Did they return to normal frequency at week 4? What happened? Thanks CHF. Good to know what is going on out there. MM still wins.

Since your Verap is taken three times a day it likely is not EX or ER - or Extended Release. I used to take mine noon, 6pm, midnight. I was almost strictly nocturnal, so I tailored the meds for those hits. It will say on the script if it is EX or ER. Long acting is normally taken twice a day. Are you still on the Pred too?

They sometimes use Epinephrine in anesthesia. You can alert them to the fact that it will set off your head. Last surgery a month ago, they did not use it on me. Also, you can request that they have O2 at 15lpm and a non-rebreather mask set up and ready for you in recovery. My last three surgeries I did that and it worked out very well. I instructed them to give it to me if I sat up holding my head with the flow set at max for 5 minutes and then reduced to .5 for another five minutes. Also let them know not to force me to lie back down either. I had a colonoscopy with normal sedation. Got hit while out. They had to administer full anesthesia to finish the procedure. When I woke, I was being hit hard. The nurse was right there with the O2. Wonderful actually. And annotated on my chart. In the last year, I have found two hospitals that listened and did what I requested. For both, I spoke to the person doing the anesthesia just prior to surgery. Good luck!!!

Yes and it sucks. It was not caused by my CH though, but by malnutrition for many months. Which was caused by Gluten and a 1/2 dead gall bladder. At any rate, I had terrible digestion problems and constant diarrhea. So, loss of nutrients and loss of hair. So, do you stress (of course you do) and lose weight when in cycle? If so, then malnutrition could be a cause by itself. Biotin supplements help some, along with really good for your hair shampoo/conditioner. My major hair loss was on the sides too. I attributed it to sleeping on my side all night. Lost about 40-50% of it all.

When you get to the level of Verap your head needs. I could only take a low dose - 320. BP dropped too low. You need to get your Neuro to up the dose. Verap is the best Pharma that I know if for CH. Pred is great, but it will destroy your hips. Just have for short bursts if you have to be PF for something special. Do not stay on it for months!!! If your BP gets too low and you still have hits, it is not working at that level. Which is a big reason people move on to alternatives. They can't tolerate the high dose. I would work forward on the theory that the cycle is ending. With that in mind, I would use caffeine or ginger during the day, along with the Verap. And avoid fermented foods, MSG, chemical smells, and whatever else sets your head off. Start the D3 Regime and get your doc to order a blood test to check your current levels of D. That will tell you if your levels are low. Most CHers have low D when checked. Make him give you the number for your level. Being within what they can call normal is not enough info. You need to be above 80ng/ml - I think that is the correct notation. Docs consider 30 to be ok. Not good enough - for anyone. They are changing that faux pas finally. I hope this helps a bit!

I have had the constant low level pain several times in the past. It won't go away. Period. At that level, they are very distracting - can't focus or think well and don't dare lean over. Leaning over ramps it up fast. I have found that caffeine helps a lot. But, ginger seems to work better for me. I use ginger candy. Some use the raw root and eat it - it is h.o.t. Others make a tea. Perhaps give that a try. I take the vitamin D Regime year round. Good for you and works great for many. Not sure why Moxie questioned it. I know that she can't take the D3 due to other issues. I strongly recommend giving it a try for two weeks. It can help in a few days. Your doctor is correct to worry about triptans. You have to keep it at no more than two shots or pills (I suspect) in 24 hours. It is hard on your heart and needs to be kept at limited usage. How much Verap are you taking? Many CHers need high doses - like up too 900mg/day. Many get by with 320mg/day. The immediate release version works best for CH. If you are taking the extended release form, ask your /neuro to change it. And keep an eye on your blood pressure. Verap will lower it and than can limit how much you take. ATB

Falling pressure is a trigger. For me. Be it changes due to my location, or a weather front, the pressure drops in cycle and I will get hit.

Hi Gail! Been a while, which is good on your end. They won't prescribe O2 because Medicare will not pay for it. Headache On the Hill is an effort to change that. Meantime, that is no help to you. You can set up with welding O2 if that interests you. I use one for the same reason. It is pretty simple and works well. You would need to buy an O2 tank, a regulator, and the Cluster Mask for the best aborts. It is the top mask I think. When you run out of O2, you just swap the empty for a full tank. Self-diagnosis: Yes, we have to do that a lot! Especially women like us. They don't think of CH much where we are concerned. And they run on the old adage that you 'age out' of CH by 65 or 70. That is bunk so far as I have seen and I am in my seventh decade too. So far as diet, many will go gluten free or close, some like the Ketogenic. I think it is best to eat what you like, but I have eating issues. Avoid fermented foods, MSG, and limit wheat and nitrates and their kin. No Blue Cheese. Do you chug some caffeine at the first sign of a hit? It helps a lot. I see other replies, so I am closing now!

On the Equinox! How fitting Tony!

Hi Claudia! Yes, I have had a cycle end and leave some symptoms hang around. The Ptosis lasted for months as did the constricted pupil. In addition, I felt every hair on my head in that quadrant burning for months post cycle. The droop was so bad that I asked my eye doctor about having surgery to pull it back up. Nope. Not without me being CH free for a few years! I worked it daily by reading and gradually bringing the book up higher and higher so that I worked the muscles to hold it up. It took months, but I did succeed in getting it to open fully and stay that way. The pupil came back to almost the same size as the other one in time. In cycle it would only dilate about halfway. Currently I know that if I feel my eyelid swelling up I need to grab some caffeine. That normally means a hit is incoming. Hope this helps and welcome to the group!

Welcome Ace! Glad that you found us and quickly. No answers on Kratom for you. What did your nuero prescribe for you? I strongly suggest that you read up on and try the D3 Regimen. It can work wonders and it is OTC vitamins. Do you have O2? Are you taking a preventative? How did you get diagnosed? Have you had a MRI of your brain yet? Some background info would be a big help! ATB

Sorry that I could not be of more help. When I 'knew' by the calendar it was cycle time, I experienced a lot of dread leading up to that date. ATB

That is wonderful plhbn!!!!!! May your pain free status last!

Hi CatCha! Welcome. The start of another cycle can be pretty depressing. And the feeling that it is inevitable and beyond your control can tick you off. Often the someone has 'shadowing' just prior to a cycle and that brings the coming fight to the forefront of the brain. For me, I cope with preparation. I take the D3 Regimen year round and have my O2 on hand. May not sound like much, but it provides some peace of mind. That being said, I also realize that I am not at my best for those around me. I sort of require more space? And a lot less stress too please. Dark thoughts are gone since I joined here and learned. Funky thoughts? Yes, still get those.

Yes. Mine started out mild too. In 1972. They lasted 20 minutes and were not agony. Pain? Yes. Agony? Nope. Well, fast forward and they morphed. Ch is really good at that. I was days and went nocturnal. I was CCH and went to ECH. And into hell. I had a very nice break for 10 years. And was shocked when they returned in a different fashion. So, my advice is to see a Neuro. and get a relationship going. You will benefit if he/she is worth their salt. Anyone keeping you on Pred for extended periods is not paying attention. Sorry. I love Pred too!!!! I save my Dose Packs for special situations - travel, etc. That way I have a plan for emergencies and no side affects. And I stick to 4 a year. Some people get the pain mainly in the eye, others get the hot poker thru the temple. Not out of the ordinary. Don't let the dentist pull your teeth! The nerve to your entire face on that side covers a whole 1/4 of your head. So, that means your teeth and sinuses are afflicted with pain. But you don't need surgery. Many of us have had it to no avail. Many have lost teeth with no reduction in pain. Your lower level of symptoms and pain is not an indication it is not CH. Just that it is new CH I suppose you could call it. Some get slammed hard from the first and others take a different route. Who knows why. ATB

I used a cutting torch for about 6 months when I found O2 listed as the number one abortive. I put a wet wash cloth over the tip for moisture and cleanliness. I never had an issue with it. Just dial it up or down on the torch handle. Just like welding or cutting. Walking to the basement in freezing weather 4 times a night got old for sure. So, I bought another few tanks and gave up 1/2 a room to my CH stuff! Privacy please. My dog was quite sad when I stopped going out all night and she lost her extra walks!

Theo, Welcome. But I deleted your post because this is your first post and from a very old thread with a link attached. Nothing about what CBD even helps you with. Do not advertise on this site. We are here to help people with CH. Spammers will be blocked. If you have CH, we are glad to have you here.

You are correct Batch. Thanks!!!! Calcium is at 9.4, so ok. I have more D3 arriving tomorrow.

Hi Virr! I have been on the D3 Regimen for years now. Since 2011 or 2012, can't remember for sure. I have my D3 levels checked yearly. This year my number was 124 measured by US standards. This was higher than my normal 103. So, I decided to cut back on the D3 to 5,000/day instead of the 10,000/day I have been taking. Guess what? I have been slammed with O2 resistant hits. Normally I am nocturnal, but these were hitting day and night. So, upped my D3 again and took a dose pack of Prednisone. It has taken 6 days to get back on track mostly. I am not pain free yet, but I am getting there. Now, you might ask why I did this. Because the doctors stick with 100 as a top number here. Above is safe if your other tests are good. But, I listened to my old doc and sent myself straight to Hades. Never again unless something unforeseen steps up and messes with it! The medical profession needs to catch up and keep up. They do not and likely will not. You are your own best advocate. ATB

Most excellent quote Jon!

I can say that for me, neck pain is an indication that I will be getting hit. If I get a painful neck during the day, I am going to get hit at night. At least 90+% of the time. I second the recommendation that you try the D3 Regimen. It is petty awesome for some CHer's and safe. Please read the link that CHFather gave you. It includes info on taking it while pregnant or nursing as I recall. Congratulations on the little one!

Welcome! O2 needs to be used in a specific way to work. Most doc's do not know this or do not mention it. CHFather has written a wonderful paper on O2 that is in the Clusterbuster Files section of the board. HOW you use it is the most important thing. The short and skinny version is to use a flow of 15lpm to 25lpm at first and hyperventilate - breath in deeply, hold for a few seconds and exhale with force. IE: Do a crunch at the end to remove all the CO2 that you can. When the pain subsides your breathing can be slowed down. Then, when you are pain free, stay on the O2 at a comfortable flow rate for about 5 minutes. If you don't that hit is going to come back quickly. And you will swear that O2 does not work or it is causing more hits! Please give your little daughter a hug for being a hero!!! ATB!