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spiny

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Everything posted by spiny

  1. Well, I am amazed that he would say that. Sort of admitting that no one there knows anything about CH. Did you get a Neuro appointment out of it? Is the Pred a five day dose pack or a longer term taper?
  2. Hi all. I just found out that our Amazon Smile account is once again working. If you click on the first post in Fund Raising Opportunities, the link put in by Bob is now working. Click and join if you would like to contribute every time you buy from Amazon. It goes to Clusterbusters. Org.
  3. Well, that bites. Yes, it really does help.
  4. Thanks for posting this Mit! It is great that you went back on the D3 and are getting relief.
  5. spiny

    Prednisone

    A seven day taper pack, where you take 6 pills the first day, then 5, then 4......... brings me relief the first day. It lasts till I get down to 20mg per day If it is going return, that is when I know. On a longer taper, it might take two days before I get to a better place. Likely due to a slower build-up of the Pred. You took a full daily dose and got slammed? Ouch!
  6. Lets redo the calendar to eliminate the Equinoxes!!! That is my 'start cycle' date. Sorry that you are getting hit again Jimmy!! May you return to PF status 'Toot Sweet' as Jeebs used to say! PFDAN to you too friend! Stay in touch.
  7. spiny

    Allergies

    Benadryl is a first line allergy treatment that has been around for decades. It alone crosses the blood/brain barrier. That is why it makes you sleepy. And why it helps with CH. Zyrtec will help with allergies. Not so much with clusters. So, how about take Zyrtec for your up/work time and then just take the benadryl at night? Many only take it when they go to bed and get good relief that way. So, your bedtime would be the ideal time to take it. I take Singulair for allergies in the morning and benadryl for my head at bedtime. Allergies can make your sinuses swell with yuck an
  8. Monica, I have been a side sleeper since puberty. Dr J - You can get caffeine in capsules online. I have 200mg ones in storage for times when coffee is not an option. That may be an aid for you that way. So, if coffee is out, perhaps give that a try. I have dumped the powder on my tongue when in a bind and needed quickly.
  9. dehabel - That cold stream running down your neck is not very pleasant! I've labelled peas that were returned to the fridge as "CH' so they don't get eaten by mistake.
  10. If you like coffee, I suspect you will enjoy the cold brewed version. Easy and less bitterness to it. I use this daily now at about 7pm. I am not in cycle. but I will get a shadow some evenings. I have found that a cup of 'preventative' coffee helps ditch the shadow before bed every time for me. And hey, we have to live with this, so buying really nice coffee for that after dinner glass of iced coffee is being nice to yourself. You deserve it!
  11. spiny

    Benadryl

    Yes, Ketamine is used for CH. We have members who have received this treatment from their physician. We would never encourage any member to take 2 bottles of cough syrup. There are many side effects, even at the recommended dosage, so why jump in for two bottles and risk a major problem because you are taking MAOI's or other necessary meds for other conditions? Robitussin in not without risk in the first place. And is not for those who take certain drugs on a daily basis. The 'proper' place for this post would be under Research &Scientific News. Members are always interested a
  12. spiny

    Benadryl

    No. Just no. This is rather like saying 'Lets kill our liver with Tylenol today!' In many states Robitussin is kept behind the counter at any pharmacy, due to people taking it for the so called 'high'. We know that opioids do not help CH. The 'quote' from Clusterheadaches does not produce a return if clicked on and was from 2003. I am fairly sure that you could find many totally unsuitable ideas on many boards if you care to invest the time to hunt for such posts. If this was valid and valuable information, after 17 years, there would be current posts reflecting the success
  13. What delightful 'new' news!! My eldest has a severe sleep disorder. It would be amazing for her to be helped by this research. I look forward to reading more about this issue too.
  14. If you can't hack the Energy drinks, I can't, strong coffee works well for me. I keep it in the fridge. Left to its' own devices, I am purely nocturnal. Yes, it makes you hate to go to bed! Scary just thinking about it some days. I wind up sleeping in the mans recliner in high cycle as it wakes me sooner when I get hit and and I can avoid some of them altogether that way if I hold my something just right. Not sure what it is, but some nights I can skip one in the chair and that is nice. It sounds like you are seeing good results here, am I correct? How do you feel about the results?
  15. Hi Monica! I am familiar with the 'stiff neck' and can say, yes, that is a signal for me that a hit is coming. Any neck pain on my CH side indicates a coming hit. Many have neck pain with CH. It will also create a knot on that side of your neck at times. I cannot watch TV or use a computer when getting a hit. The refresh rate seems to be flickering to me, at that time and the pain level goes up immediately with screen time. If I am not getting/having a hit, I do not have an issue. The Trigeminal Nerve feeds one whole side of your face and that quadrant of your skull. That includes t
  16. Bust, the Energy Drinks make me sick and shaky. I keep coffee in the fridge made by the 'cold brew' method. Namely, you put grounds in the holder that goes in a jug and stick it in the fridge. In 24 hours, you have cold brewed coffee. Just convenient for me. I used to just make extra coffee and keep it cold for a hit. Caffeine alone works well for me and some others as well. If you can enjoy a cup of coffee with no issues, then I would try that. Cold is best for most CHers. Just the cold seems to help at times. Someone once said ' One for drinking and one for rubbing.' They were sa
  17. Your 'share' will help others. Many will read it and relate. Now that you are a member, the closed boards are available. That is where the busting info and posts will normally appear. We keep those boards for members only. When discussing busting, post that question or thread on Theory & Implementation or Share Your Busting Stories. You will get more replies there. Being closed keeps the Bots from accessing that info. The D3 Regimen has helped many either get pain free or at least it slows ramp-up time and lowers the max intensity. It really does help a lot of people and is ju
  18. Well, he may think he is doing it for safety when he does not understand that many CHer's have a tank or three of O2 at any given time, year round. Even Episodic's do not wait for a cycle to hit before getting their O2 in order! They may store them carefully out of sight, but they are at the ready when needed. When you set it up, you check for leaks. You secure it so it won't fall and create a possible hazard. Odd that they will give you meds that can be deadly and that is fine, but O2 tanks are a hazard. I find this to be a bit insulting. Perhaps not intentional, but still insulting. It
  19. Indo is very hard on the stomach and many who take it take a medicine to protect their stomach. They should prescribe something to protect your stomach lining. I am not surprised regarding your feelings. Any of the diseases we see here - different Headaches, can cause you to become depressed when you see no end in site for the pain that you are experiencing. Living with 'Life on Hold' is not easy. However, most of us find relief and figure out what, if any adaptations we can make to get our lives moving ahead again. It can and often does take time and can be terribly dis-heartening.
  20. Hello Dr. J! I can respond to the temple/cheekbone bit. My CH is a glowing hot railroad nail in my temple. It grows and the pain crawls out of my head and lights up the branches of the trigeminal nerve. Then it bores into my brain and eye. My family sees me rubbing my forehead and the let me know because I am absentmindedly rubbing while talking or watching TV. And that is the end of my evening with uncontrolled CH. They began with one a night at 8pm. Then, weeks later they began to hit at night - right after I fell asleep. As the weeks went by, it worked up to its' peak of four per nigh
  21. Batch, can you explain to me what the Quercetin does? The what and why of it. I have it here and have seen it recommended by some in the viral/medical fields. Thanks!
  22. spiny

    Benadryl

    Hi dehabel. When you read the link I suggest that you print out a copy if you can. That way you will know what needs to be prescribed and can show a new doctor. Insurance can be a fight, but that O2 is life saving! CHF - Does your link contain that page? Usually you have that too. The D3 Regimen is several vitamins that you take to hopefully bring down the intensity of your hits and to slow the ramp up down so that you can get to your O2. Many people have gotten Pain Free doing that. Mid cycle? Likely not. Help prevent the next cycle? Yeppers. After such a nice long break, it
  23. This action is supported by all admin personnel. Each of us have responded numerous times to pm's and 'alerts' from this person. The fact that less than a handful of members have been banned in over a decade shows that we strive to help people. That is our only agenda. Please keep in mind that this is a safe place for people to discuss and work on pain relief and having a 'normal' life. We all have Ch. Every Admin strives to provide a safe place for our friends who suffer the same disease or similar. We are walking the same path as our members. Family clashes can and do occur
  24. spiny

    BOF

    The statement above is over the top. Yes, you may post on any thread and you know that. It is polite, if you don't like the thread, to scroll on by and not even bother with it or the OP or the responses. That is also common knowledge. And you and I have discussed this already. More than once. What kind of person continues to attack even when there is no reason? Or expects the board that they joined and benefited from, to now decide how the board should be run to meet their personal needs? None of this is helping any other Clusterhead. NONE. Our goal and function is to help people w
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