spiny

Go Rockstar!! Glad it worked for you.

We are working on it. Posting has been very slow as well. Likely a sever issue. I will talk to Jeff again. I deleted your repeats CHF. What 'request' jon? I am not aware that you requested anything! I would have responded to you.

Get a hand truck. Leave it on the truck!!! Easier to haul by a long shot,I usually have a 90 and a 60. But, on occasion they have not had one and I wind up with a 120 or 125. Heavy sucker!!! Whatever size you get, be sure to have two!! One to use while getting a re-fill on the other. The CH mask is the BEST!!

Yes. My first 'bad' cycle. The quadrant on my CH side burned so bad, I felt that I could count the follicles! Months of misery because it never went away for several months. I dreaded shampooing my hair. I hope that it does not get that bad for you!!!

You should have no issue taking your nasal spray with you in your carry on I don't think. I would check with the airline before heading out though. If not, take your script with you. Many will take some energy shots in their carry on bag too, just in case. As urs said, hyperventilating can be a big help in slowing or stopping a hit at times. I would not use the bag though, as you want more O2 not the CO2 you exhaled. Just breath in deep and exhale with force. Repeat. It helps clear the CO2 out. If others are around, then do a long exhale instead of faster and with force. But inhale quickly and hold it for a few seconds. As for the Pred - I would start it the day before my flight. Then have a new taper pack for the return trip. Assuming that you will be there over a week of course. You normally would not want to take to taper packs back to back. But this might be a special case scenario. Not like you are going to be taking the stuff daily for your entire cycle. Sorry, that is all that I can think of at the moment.

Hey Rush! Have you added some Benadryl to your D3 stuff? It can help when the pollen is out there. I would definitely have the blood work sent to you! very important info for future use. ATB

Fixed. I know that the D3 regimen can lower your intensity. So, that may be part of shadows only gig. Have you tried adding some Benadryl at bedtime? That can help many. As for the change in length of cycle, I think that is common for many of us to experience at one time or another. Don't worry about going chronic. It isn't likely and worrying won't help. For some, medication can extend a cycle. Your dose of Verap is low and perhaps that plays a part. I don't know. But most require a higher dose to kill the pain. Another thing is the weird stinking weather this year!!! Barometric changes and such are not good for many CHers. That may play into it. The best that I can say is longer with lower intensity beats longer and as intense. Any change except going PF tends to make us all nervous!!

I will fix it. No problem. I stay on it year round. Very good for you from my reading. And then if your cycle changes, you are already at optimum levels!!

Welcome mariarod18! We love our supporters. Has he seen a headache specialist and been diagnosed as having CH? Did he have a scan done - likely a MRI - to rule out other potential issues? This is an important step. Cycles starting around seasonal changes are pretty common. Kind of a hallmark of CH. O2: Yes!!! It is the best abortive out there. Please get him to insist on O2. He needs a flow rate of at least 15LPM and a non-rebreather mask. These are his best tools to abort with. Push and push for O2!!! Next, I would suggest that you look into the D3 regimen. It is just OTC vitamins that have helped many lower their pain and frequency or even go pain free. You will find info on both in the Clusterbuster Files section of the board. D3 he can get started immediately. O2 is his best shot a aborts. Has he tried and Energy Shot or Drink at the very beginning of a hit? They can really help!!! The most commonly prescribed medicine is Verapamil. He wants the short acting variety, not the extended relief type. For some reason it works better for us. Likely he will need 360mg/day and possibly more. Low doses do not often work for CH. Some take as much as 960mg/day. However, he needs to keep an eye on his blood pressure as verap lowers it. Normally the verap is ramped up over a period of time. The other common med is Prednisone. Just for 5- 10 days until the verap builds up in his system. Not to be taken long term as it will destroy hips!! These two medications are the best and most commonly prescribed pharma for CH. if possible, you may want to go with him to the doctor. You can back up his symptoms and help remember the questions he wants answered and so forth. Being brain fried from CH can make some things difficult. Every patient needs an advocate in my book. He is lucky to have you looking out for him!!

I have to agree that getting hot is a trigger for many, I think that a sow stretching form of yoga would be ok. We all want to maintain some feeling of control with this mess and that could help you do that. I hope that you have a mouth guard for your bruxism! I would not think that all the grinding would be a good thing. As in you don't want to aggravate any of the Trigeminal Nerves. My mouth guard has to be replaced fairly often. O2 should be your best friend!! You need to have 15 to 25plm and a non-rebreather mask. 100% O2, not a concentrator. You don't mention a doctor, so do you have one who could prescribe the O2 for you? Have you had a scan to rule out any abnormalities upstairs that could be an issue? Usually that scan is a MRI. And are you on any preventatives? While I have not heard of heat 'triggering' a cycle, a negative response to getting hot can be the signal that a cycle has begun. Sort of like having a beer and getting hit right away. The beer signaled the beginning and is a trigger in cycle.I have had several cycles announce their presence by getting 'triggered' by something that I had no problem with the day before. It can certainly trigger a hit when in cycle! And, just when we think that we 'know' the beast, it can change. Pretty sneaky it is.

Most of us take it during cycle and then taper off when the cycle ends. As you said, you can't take as much when out of cycle since your body is now making an adequate amount. Friends are freaked out that I can take so much during cycle, when 3mg makes it hard for them to get thru a day! Glad that you found it to be helpful!!!

Ha,ha,ha Jon. You crack me up. Great advice sir.

Drat. System lost my entire post!!! Scoobs, I have not heard that living by the ocean helps. Especially with storms like hurricanes causing barometric pressure changes. That is a major trigger for many. Have you read he O2 file in the Clusterbuster Files section of the board? What type of set up do you have now? Mask and flow rate matter a lot! Pred is used as a 'bridging' medicine until a preventive like Verapamil kicks in. Tylenol and Advil normally do not help much if at all. Have you been prescribed a preventative at all? Pred. is not used long term. You really need a Neurologist - headache specialist if possible - to diagnose you. And get a scan done to make sure there is nothing else going on up there. You might want to start your own thread so members can find it more easily. Your posts can get lost in an existing thread. Oh, and welcome BTW. Sorry you need to be here, but you landed in the best spot!

Getting hit while out and about is really hard. I really hope that you will start keeping an Energy Shot or three on hand and with you. You can also use V8 Energy if that goes down better. Not quite as good according to many people, but it works for me. I also carry caffeine pills with me. They can be purchased in different strengths. Sometimes shadows can be warded ff by using a breathing technique where you inhale deeply and then exhale with force. You are trying to rid yourself of CO2. So, treat it like a breathing test. Exhale and add a crunch for starters. Then continue with deep breathing. Those short shallow breaths we tend to take when in pain are not the best thing. The anxiety and fear can eat your lunch, so the better prepared you are, the lower your stress will be. Can you contact the pharmacy and get the old script for your pills? Tuesday is a long way off when you are hurting. That might actually help.

Tegretol is still prescribed by some doctors for CH. I took it for years and thought it helped. But, then the CH really got ahead of it and even at massive doses it did nothing but give me triple vision. Verapamil was much better. TN, as you say is very different. A puff of wind can cause an attack, or eating, or anything really when it is active! What you are describing sounds like CH to me, especially your report of last nights episode. Wanting to be out of sight is also common. We don't want our loved ones to see us in that state. Having your hormones change may actually be affecting it sadly. I have read of several women who were pain free during pregnancy, but right back in hell after delivery. Did you try the Energy Shot or any form of caffeine? It really does help. You might try melatonin 9mg to 25mg at night. Take about 30 minutes before bedtime. I have also found that if I am getting hit at a certain time of day, I can down some caffeine shortly before and it helps. That 'dull headache' might be what we call a shadow. Caffeine will help that too. Or ginger in any form: tea, candy, or raw. Raw is H.O.T. In tea, you have to keep stirring it as is does not really dissolve. Have you considered starting on the D3 regimen? It can help pretty quickly for many CHer's. I hope that tonight is less painful.

Hmmm. They all eliminate the ones over 65. Why? I may call them anyway. Kind of sucks as i am close to Charleston. Thanks Megan for the info!

Awesome that you have gotten great help from the D3. I stay on it year round too. It is good for you and you will already have your D3 in order for the next cycle that shows up. It is hard to say how you will 'know' all the triggers. I personally have a few that are constant. Barometric pressure drops are a big one. Then you have alcohol, MSG, and overheating. With overheating I get a normal headache first and then comes the CH. If it is a delayed response it will be harder to track. For food triggers I would suspect the only way is to document what you ate that last meal. If you had pizza, it could be the pepperoni or gluten. Say you have a grilled cheese the next day and get hit. Then it begins to sound like gluten to me. If you have bacon and get hit like with the pepperoni, then I would suspect nitrates. The issue there is that nitrates are turned into nitrites by your body as you digest them. It gets difficult as you can see. But keeping a diary will be a huge help. Some react to scents as in perfume or solvents like paint thinner. Those will hit pretty quick like alcohol. Or that is my understanding. While I am 'gluten intolerant', gluten does not give me a CH. Digestive issues - very much so. It is a process to track them all down. The ones that hit quickly are an issue for sure. Avoid them once you ID them. I have seen many triggers mentioned. Some I would never suspect, but they appear to cause CH for some people. I think that if you track your major ones and eliminate them you have accomplished a lot. I would not be overly concerned about finding them all in a month or two. ATB

Welcome greeneyes. I am glad that your MRI came back clear. It rules out other stuff, but does not say that you have CH. Clusters normally last up to 3 hours, not all day. You may get many attacks in a day, but are pain free between them. Yes, you will still have muscle soreness even when the CH subsides. But the screaming pain is intermittent. Many begin with short hits of 5 to 30 minutes. That can get worse later in life. If you look up Tirgeminal Nerve, you will see all the nerves that can be affected during a hit. There are three main branches and many smaller ones. Normal pain meds do not help with CHers. Some may occasionally think that an Oxy or two helps. They are very few and far between. Some have had multiple injections of morphine in the ER with no relief. Your quickest defense is an Energy Drink or Shot. Even a cup of coffee will help. All should be downed at the first sign of an attack. Next is to have O2 in bottled form available to you with a non-rebreather mask to breath it thru. An O2 concentrator is not going to give you 100% O2. The steroid taper pack should provide relief the day you start it. It is often used as a bridging med until a med like Verapamil can build up in your system and begin to work for you. There are some look a like headaches. paroxysmal hemicrania, short-lasting unilateral neuralgia headaches with conjunctival injection (SUNCT) and hemicrania continua.Some of these respond to Indomethecin. I may have spelled that wrong. Keeping the diary will help your doctor make a diagnosis. The crawling feeling you mention is not something that I have had. Initially I had short visual disturbances. It is so long ago, it almost lost history!! Not many actually go from episodic to chronic. Some have remissions of 18 months or years between episodes. Others are right on schedule from the start - every spring or fall say. Others report longer and stronger hits as the years progress. Those who also have dealt with migraines report that CH is much more painful. Let us know how you are doing after the Pred. you are starting today. If you feel a hit coming on, get some caffeine into you quickly. It really does help. If it is CH, there are several things that you can do to mitigate the pain. My heart goes out to you. I look forward to hearing your update. And I apologize that I did not see this post sooner. Hugs!!!

I would say that that is correct. Alcohol is a well known trigger while in cycle. Out of cycle most can drink. Not drinking while out of cycle will not prevent the next cycle unfortunately. There are many things a person can do to reduce the frequency of hits or the severity of hits. The one thing I would highly recommend is starting the D3 Regimen and staying on it year round. It can be found in the Clusterbuster Files part of the site. For some, it does prevent the cycle starting. Others get enough relief by doing it they take those vitamins. Supposedly one can 'age out' of CH. I have never met such a fortunate person. But many doctors will still tell their patients this.

Welcome! Sorry you need to be here, but glad that you found us. I have not heard of SAM-e. Is that something being discussed online? Is it a pill? Yes, that grain of salt is a good idea. Ok, looked it up. s-adenosylmethionine Primarily used vitamin supplement for arthritis and depression. Then many other 'uses; added to that. Nope not tried it and not likely to either. At least until there is some real data on its' effectiveness. The D3 Regimen, when taken in it's entirety is very helpful in reducing intensity of hits and for some even ending cycles. And It is good for you. I suspect that most if not all of us have gone thru the 'I had those once' thing on more than one occasion. I also suspect that many are saying they had headaches for two weeks or something. Not the same at all. They just think that they know and have had what you are experiencing. They are so wrong. While very annoying, we can at least be happy for them that they are wrong! To me, the worst part is all the suggestions on how to treat your "headaches'. Well, first, they aren't headaches!! And no, your Tylenol will not work. Nor will your Oxy. Do you have O2 with a proper set up? That can be pretty vital in cycle. Glad that you have been reading here. There is a wealth of information collected overs years with input from sooo many CHers.

Oh Swiftlaw, that bites. I can certainly understand the reason you did it. Pretty darn brave I think. From what bit I know, yes, it will stop. Do you have O2 and are you on the D3 regimen? I don't re-call, sorry. Both are great and should help. In the long run especially the D3 stuff. I find that caffeine definitely helps with the shadow. And a heating pad on the neck is a good aid. My neck will sometimes to ache for quite a while post cycle. I use heat and Ibuprofen for it. Sometimes at prescription dose - 800mg. Not long term or daily, but occasionally at that level. None of that stuff is good for your body daily. But, a doctor will often prescribe the 800mg for a week or two with an injury with inflammation. I have also found that head position when going to bed is of major importance to me. I turn the pillow on edge to get the right 'fit' for relief. Have you considered seeing your doctor about this?

Welcome Ken! Sorry you need to be here, but very glad that you found us. I have found that just knowing what to do and when is great for reducing anxiety. Knowing others are in the same boat helps too! With your interrupted sleep pattern, I would definitely go for the Melatonin. One physician, can't re-call his name says 25mg at the max. I have taken up to 30mg/night. I space them out and only take the third if I am waking constantly. It is a crime that this condition has had so little funding or attention. It is very debilitating. All medications are migraine 'hand me downs'. However, there is hope on the horizon with the new trials getting set to begin over here. Trials of psilocybin!! It has been shown to be very beneficial for CH and PTSD. We are all pretty excited about it. I hit the caffeine for the persistent shadows. It helps. And I highly recommend the D3 regimen. Vitamins worth taking. You can also hyperventilate and exhale with force ( think crunch) in lieu of O2 until you acquire it. That can actually help. You want to force out all the CO2 from your system - ergo the forceful exhale. Stay in touch!

Keep getting better Jimmy!!! Stay with those vitamins too. Hugs!!!

Loving those fish Batch!! erasrhead: I am right there with you on the 'keep your blood sugar on an even keel'. It gets out of whack and I am a looney tunes person.

I would contact the Company and ask about taking his O2 with you. Or them providing it for the trip. As long as he has a script, O2 is provided world wide for travelers. You can have it waiting for you at an airport! I definitely would take the Energy Shots. Have fun.