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Everything posted by spiny

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


    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!
  6. spiny

    Cluster Headache Awareness Day 21st March 2019

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


    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
  10. 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
  11. spiny

    Cluster after 30 Year Hiatus

    That is wonderful plhbn!!!!!! May your pain free status last!
  12. 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.
  13. 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
  14. 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!
  15. 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.
  16. spiny

    Vitamine D3

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

    Vitamine D3

    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
  18. spiny

    Busting the Clusters

    Most excellent quote Jon!
  19. spiny

    Confused and out of whack

    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!
  20. spiny


    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!
  21. spiny

    Has melatonin made CH worse for anyone?

    I suggest replacing it with benadryl. Works much better for me.
  22. spiny

    Ginger for preventing or aborting?

    Yes, I have used it to abort as well as for shadows. As with anything else, take it quick, do not take the wait and see approach. I found some real candied ginger 2 years ago and grabbed it. Before, I had used some lozenges that were not nearly as effective. I suggest checking on Amazon for it. Mine is Little Temptations crystalized ginger - ginger with sugar.
  23. spiny

    I can't make this one go away

    Welcome Elrik. Most find 10lpm to be too low. The recommendation is 15lpm and many of us need 25lpm at the start. I tried 10lpm at my PCP's office a long time ago. Neither of us knowing any particular method, I just breathed it rather fast. You need technique to get it aborted quickly. And you need to stay on itfor 5-10 minutes after your pain is gone completely. Cheat and you likely will get hit again right quick. How are you breathing it? Napping is a big no-no for most. A nap will bring on a hit it seems. As you wake with one. If you are exhausted, you sleep too long and wake with a bruiser. It sucks when you are so tired. Keeping to a consistent sleep schedule is a really good idea. What do you take as a preventative? Triptans are for aborting. You need something to prevent if possible. The most commonly used drug is Verapamil. Often in pretty high doses. Did your neuro put you on a preventative? Any caffeine taken at the first sign of a hit will help. Many like Energy drinks or shots as they feel the taurine in them is a help. Some use strong coffee because that is what is available to them. Do not wait till it is screaming to drink your caffeine! If all the neuro gave you is O2 at too low of a flow and triptans, you might need a new one. You need a preventative in addition to an abortive. ATB
  24. spiny

    Happy Holidays and thank you

    May you have a lovely holiday Jimmy!!
  25. spiny

    Women with CH

    Interesting abstract Cheryl. I had a long remission that ended in my 50's. They returned with fury too. Previously I had been Chronic with lower level pain and no nocturnal hits. When they returned 15 years ago I was Episodic and Nocturnal. Untreated or poorly treated, my cycle runs Solstice to Solstice. Unless it gets prolonged by a surgery or something That produced an 8 month cycle a few years back. Several males have had long remissions too. Upon return several changes are notated, such as going from daily attacks to nocturnal attacks. Also, the greater severity is common too. So I would say that the changes you are experiencing are rather common. I suspect that you have looked at the Trigeminal Nerve diagram. It shows all the branches involved with that nerve. The three main branches are over the eye, under the eye, and the jaw. So, that covers all the nerves on the entire side of your face on your CH side. Teeth and sinuses included. As far as rain is concerned, it usually includes a low pressure front. For whatever reason it is falling barometric as opposed to rising that sets my head off. That is pretty common. It is also common for migraines. Verapamil is top med for it too, not Topamax. In addition, pred is awful for you over the long haul. Like needing hip replacement awful. It is normally used as a 'bridge' medication to get you thru till the Verap kicks in. You might discuss a medication change with your doctor. And he should know to provide you with O2!!!! It is the best abortive out there and not harmful to your body. It is infuriating when this is not offered as a first line of treatment!! Advance warning - Medicare does not cover O2. You might want to try some caffeine at the first sign of a hit coming. It can be a great help. Also, you can set up a welding O2 tank and buy your own O2 without insurance or a script. You will need a non-rebreather mask to use with it for best aborts. Oh! Don't worry about being Chronic yet. That means you have less than 2 weeks pain free in a year. It is quite likely that come spring your cycle will end. ATB