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ClusterBusters

spiny

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spiny last won the day on May 25

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  1. 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.
  2. 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?
  3. 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.
  4. spiny

    Newbie here from Iowa

    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?
  5. spiny

    Hip Surgery

    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!!!
  6. spiny

    Massive hair loss - cyclical

    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.
  7. spiny

    Day-long low intensity episode

    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!
  8. spiny

    Day-long low intensity episode

    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
  9. spiny

    Scuba Diving

    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.
  10. spiny

    Verapamil

    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!
  11. spiny

    Cluster Headache Awareness Day 21st March 2019

    On the Equinox! How fitting Tony!
  12. I think that I will stick to the D3 Regimen. It is also directed to CGRP as well and has been proven to help many patients become pain free with vitamins only. Over the counter and good for you stuff. No CH beats a 'reduction' in CH any day of the week. And vitamins are cheap. This biologic will not be. Also I have found that if there is a side effect I likely will have it!! So, for me, no Pharma is best. ATB!
  13. spiny

    'Symptoms' Only - No Pain?

    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!
  14. spiny

    Kratom

    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
  15. spiny

    Pre Episode symptoms: do you have them?

    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
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