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ClusterBusters

spiny

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spiny last won the day on March 16

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  1. 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!
  2. 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
  3. 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.
  4. 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!
  5. spiny

    Cluster Headache Awareness Day 21st March 2019

    On the Equinox! How fitting Tony!
  6. 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!
  7. 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!
  8. 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
  9. 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
  10. spiny

    Cluster after 30 Year Hiatus

    That is wonderful plhbn!!!!!! May your pain free status last!
  11. spiny

    Pre Episode symptoms: do you have them?

    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.
  12. spiny

    Hi! (First Post)

    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
  13. spiny

    Benadryl to bust imitrex rebound

    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!
  14. spiny

    Cbd oil

    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.
  15. spiny

    Vitamine D3

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