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  1. Today
  2. Thanks for the kind words. I guess that having migraine pain defiantly sucks but at least I can function with them whereas with clusters I could not.
  3. CHfather

    Newly diagnosed CH

    Not an expert, but I've looked into this a lot. It does "indicate" what you say, but it is not conclusive. People with other "headache" conditions sometimes get relief from oxygen. For example, a notable "headache" expert wrote some time ago (2007), " I have found approximately 50 percent of my patients with migraine headaches will be able to achieve some relief with oxygen therapy. They use 100 percent oxygen for eight to nine liters a minute for up to 30 minutes." https://headaches.org/2007/10/25/oxygen-therapy/ If that was true, would more people have better results with higher flows/better masks/etc??
  4. Brain on fire

    Newly diagnosed CH

    Beautiful thread. Nce to see this kind of support on a consistent basis.
  5. jon019

    Newly diagnosed CH

    ...remarkable post Chris!
  6. CHChris

    Newly diagnosed CH

    @CHfather is absolutely right, listen to everything he says. I can't stress enough how important oxygen is for the treatment of CH. I can't say for sure you have CH, I am not a doctor. But I think CHFather is right that you should treat it like you do have CH and would strongly recommend you try out oxygen. I suffered with CH for 7 years before I got O2, and things completely turned around for me once I did. Imitrex is a good starting point, but I can abort a headache with O2 with no side effects in about 10-15 minutes. Imitrex makes me feel tired and terrible and can make things worse if you take it every time you get a headache (every day). My understanding of how oxygen works is that it has vasoconstrictive properties that cause the blood vessels pressing on the trigeminal nerve to constrict (get smaller) and stop pressing on the nerve. I am not a doctor, however, and this may not actually be the case with oxygen. Not a lot about how it works is actually known. At any rate, some of your symptoms sound like what happens to me. The hard thing here is that nobody has the same symptoms and triggers. Like @jon019 said, we are all different, yet the same. 2pm is a normal headache time for me, I call them my "cluster times" (mine are 2pm, 6pm, 10pm, and 90 minutes after I go to sleep). I can practically set my watch to it. There are others that are triggered by any number or combination of things, and you are going to have to find out what yours are. Some of the medical literature says clusters don't have triggers, but that is not true. For example, alcohol is a trigger for a great number of us. To make matters more complicated for you, you describe other symptoms that are not necessarily unique to CH. Some of what you describe we know here as "shadows," and there is almost nothing in medical literature about them, but most of us have them. There is a feeling in your head before you get hit with the intense pain, and it acts as a warning about what is coming. When the pain comes it is searing or hot and located behind your right eye. That pain starts migrating into the orbital area and reaches down into your sinuses and your jaw on the same side. That is because the trigeminal nerve attaches to all of those places, and is the nerve that causes our cluster pain. (CH is one of a group of conditions known as Trigeminal Autonomic Cephalagia) Also included with the cluster attack is a profound tension in the neck. This created issues with my diagnosis of CH, because it is part of the mechanism in migraine as well. I have seen no medical literature on this, but anecdotally I have a few cluster buddies that talk of their "cluster knot" in their neck or shoulder while they are in cycle and complain of the almost painful tension in the neck and shoulder. I also have sensitivity to light, especially where there is a large contrast (ex: oncoming car headlights at night). As far as the sleeping it off goes, I can only do that with shadows after an attack. However, napping is a big time trigger for me, so I can't take a nap unless I want to get hit with a 10 later that day. When I did nap, I would wake up with that familiar feeling behind my eye. This is present for me any time I take a nap, even if I was feeling fine before I went to sleep. Also, you need to start keeping a headache diary. This is important because if it is CH, chances are that they will suddenly stop one day, only to return later down the road. There are 2 types of CH, episodic and chronic, and most people (75%?) are episodic. Keeping track of your headaches, descriptions of the pain, what you ate that day, weather conditions, stressful events, etc. can help you determine what is going on. That is good information to have even if you end up not having CH. I apologize for this being so long, I hope it is helpful. I hope you don't have clusters. But if you do, you are absolutely in the right place. There are a lot of people here who understand and are happy to help you. Your first step is probably to get some O2 to try. A question for the experts: If you can abort your headache with oxygen, doesn't that indicate that you do have CH and not one of the other TACs or migraine?
  7. CHfather

    Newly diagnosed CH

    The clockwork regularity is a feature of CH that is not common to other "headaches," at least as far as I know. Of course, it is possible that you are doing something before 2:00 every afternoon that brings on a severe headache, but I don't know what that would be (eating food with MSG in it would be one possible example, though nothing really explains the severity). As jon' said, being able to lay still or go to sleep is very uncommon. "Restlessness" is in fact a diagnostic symptom of CH. Other CH symptoms include tears from the affected eye, redness in that eye, swelling in that eye and a drooping eyelid on that side. Also runny nose and pale skin. Without a different diagnosis, you of course need to treat it as CH. I have the feeling that maybe your Imitrex is a pill. If it is, it will be a very little value. As jon' says, Imitrex (sumatriptan) is meant as an abortive, to stop an attack, not as a preventive, to prevent an attack. If it is in pill form, however, you should almost treat it as a preventive, taking the pill about an hour before your expected attack, but, more importantly, (b) you should get the injectable form of Imitrex, which will stop your attack (if you have CH) when injected right at the start of an attack. In any event you can't "get it under control" with Imitrex. In fact, the more Imitrex you use, the more likely it is that you won't get it under control. Oxygen is a must! Insist on it, right away. I'm not sure what the "IV treatment" you refer to might be. There are some, but they're not usually used this early in the process. However, your doctor might have been referring to a steroid, typically prednisone, which when taken in sufficient doses can stop (temporarily) the pain of CH. It comes back, but you get some relief and time to organize your other treatments. Right now, you have no preventive (verapamil is often prescribed as a preventive, and many or most people here have found that the "vitamin D3 regimen" is a very effective preventive. They both take time to work. (There is more information about both verap and D3 in the document I refer you to in the next paragraph). You might try quickly drinking an "energy shot," such as 5-Hour Energy, at the first sign of an attack. For many people, but not all, that will reduce the severity of an attack and possibly even stop it. Strong caffeine helps some people. Some people get very good benefit from taking Benadryl, 25mg four times a day. There are many other suggestions, of varying value, in this document: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ I would urge you to follow the links there. I'm sorry it's so long, but I wanted to get down most of what I could provide to someone in your situation. You asked, "How does oxygen help?" Not sure anyone knows the exact mechanism, but oxygen, properly set up and properly used, aborts attacks, typically in less than 15 minutes and often much more quickly than that. More info in that document I just mentioned.
  8. Amun Ren

    Newly diagnosed CH

    cant hurt to try oxygen. I used to always think going to sleep was the only way to deal with them as well. what i would actually end up doing is just taking enough over the counter whatever to incapacitate myself from trying to fight the pain and just cringe in bed for 90 min until i pass out..
  9. Yesterday
  10. jon019

    Newly diagnosed CH

    ...if it is....it's an odd form..but we are an odd bunch..... everyone the same yet different... .... typically the need to move is nearly uncontrollable..moving doesn't make a hit directly worse....or better (except for distraction....)... ....sleep!!!???.... can't see how...many a clusterhead has prayed to just pass out from the pain w/o success... .... what sounds like many hrs long is unusual (for me only with a very rare 10....)....not at all unusual to wake up with a new hit tho (and some experience what could be described as wax/wane of same unresolved hit).... ....if yur Doc knows about Oxygen it should have been #1 priority ...with Imitrex back as last resort abortive....NOT meant to be a preventative.... Best Jonathan
  11. Rush

    Prescription Frustrations - long rant

    I went to the Orlando Medical Rentals website, and it looked familiar, but that's all I can remember from 2+ years ago when I had the Rx.. I got so frustrated after a couple months that I gave up to go with the welding setup.. My wife is so irritated that I did not follow through when I decided to go with the welding tank, because my cycle ended and have been pain free for 2+ years. The 125 tank sounds good, I found a place about an hour from here that didn't seem overly interested in what I needed it for so I am going to go that route. Still only having shadows for now, but my last cycle was hitting me HARD 2-4 times every night so I was curious about the tank size. Kinda strange, I have been getting these since my early twenties (I am 61 now).. and they mostly were all during the day, but last 2 cycles were 95% during the night.. odd The neurologist I saw to get the Rx I only saw once, or I would give it one last shot with the Place you found.. to scared to wait now :\ Thanks for info Chris!!
  12. Jentle

    Newly diagnosed CH

    And how does oxygen help ?
  13. Jentle

    Newly diagnosed CH

    When I click blue banner all it talks about is busting. I’m hoping to get advice on whether what I am describing sounds like a CH?
  14. Rod H

    Just to put it in perspective

    What no toothache?
  15. Rod H

    Newly diagnosed CH

    Very well could be. At the top of the page there is a blue banner. Click it and read away. If it is your doc is right with the oxygen.
  16. Jentle

    Newly diagnosed CH

    But how do I really know that it is CH? About 6 weeks ago I started getting this headache every single day around the same time (2pm). It would start in behind my right eye mainly at first and my jaw and sinuses would hurt. Light sensitivity and it would then encompass my entire head and back of neck. Even trying to move my head intensifies the pain. This has continued on for 6 weeks now and the only thing that helped was going to sleep (I was taking Benadryl thinking it was allergies, Tylenol that didn’t remotely touch the pain, I tried stopping caffeine and adding back in. I can’t use ibuprofen. I tried more water intake and even not skipping meals. Nothing alters the headache and once they start i have to sleep it off, and with that sometimes I wake with the headache even worse. I finally saw my PCP the other day and they said it sounded just like CH and prescribed Imitrex and said I may possibly need O2 or IV treatment if I can’t get under control with Imitrex. So far Imitrex does lessen the intensity of the headache but I can tell it’s still there. Almost the way it feels as it normally starts, but doesn’t get beyond that. So I don’t know that I’d say that’s successful. Does this sound like CH to you guys?
  17. wing_nut

    Letter to employer and family?

    Dallas Denny, you are awesome. Thanks
  18. CHChris

    Prescription Frustrations - long rant

    @Rush I think the 125 cu ft tank is the perfect balance between size and portability. The tanks are fairly large, but I can carry them around without issue. I fill my E tanks off of them and also have them set up for home use. The rough conversion is that a 125 cu ft tank has almost 3500 L of O2 (close to the volume of 6 E tanks), and that can usually last me a couple weeks. If I have a really bad hit (or get hit at night), an E tank is not quite large enough to kill it. Having the extra capacity in the house and ready to go is of great comfort when you're getting hit a lot. Also, I had a good experience getting an O2 Rx while traveling to Orlando a few months ago. I had absolutely no trouble getting E tanks delivered to my hotel room, and only had to fax them the Rx. The company is called Orlando Medical Rentals. They appear to be setup for serving vacationers paying out-of-pocket, so it might not be cost effective for someone who lives in the area. But I thought I would pass along probably the only good experience I have had getting service from an oxygen supplier.
  19. Daily Chronic Headaches, Chronic Migraines and Clusters are all Hell. Just different Hells. After awhile, pain is pain and it all makes you cry. Mox
  20. MoxieGirl

    Just to put it in perspective

    I've always thought Trigeminal Neuralgia was right next to clusters, surprised to see it so far down the list. Both attack the trigeminal nerve. Kidney stones were the worst pain I ever experienced, till clusters. I now rank it as a 5 on my 1-10 scale, my worst clusters have scored a 14. Mox
  21. Batch

    Just to put it in perspective

    1 - Cluster headaches – One Bio-Tech D3-50/week plus all the cofactors prevents my CCH completely 2 – Shingles – A 50,000 IU dose of vitamin D3 stopped vericella zoster and its pain overnight. Continued dosing at 50,000 IU/day plus the cofactors for 3 more days prevented its spread, postherpetic neuralgia and rash. PCP amazed. 20 - Pain after surgery – I loaded vitamin D3 at one Bio-Tech D3-50/day plus cofactors and extra magnesium for a week prior to abdominal surgery. Came off pain meds 24 hrs after surgery. Restarted vitamin D3 at one Bio-Tech D3-50 plus cofactors 2nd day after surgery. Minimal pain and rapid wound healing surprised my surgeon when he removed the staples.
  22. Dallas Denny

    Letter to employer and family?

    Here ya go wing_nut! http://www.clusterheadaches.com/wwwboard/messages/63158.html?fbclid=IwAR26DY-Zyy6hVnPkL-YkuVMcXDEiN6cEBAV0r3H8OUvlj9SE6fQKyBSDe54 Dallas Denny
  23. Years ago I downloaded a generic letter to employers and family from the clusterhead website. Does anyone have a copy of that? or know where I can find it?
  24. I suffered from migraines in high school and college and I would trade to have those back in a heart beat. I only get them now when the weather is bad (stormy) I live in FL, so the summer time is bad for me.
  25. I so wish that you could ditch the migraine like the CH!!! Many have and it breaks my heart that it does not help you in that respect!
  26. Edgar

    Weak background pain after end of cycle?

    Hi All, thank you for your replies I have been diagnosed with Cluster back in 2002 or 2003 and had every year 2 cycles per year, every cycle 6-8 weeks with 2-4 attacks daily. I was given triptans (imigran nasal) and naratriptan to block the attacks and it worked fine. The doctors told me that my cycles are too short to put me on something else. This was until 2013. In 2014 I had Remission the whole year and the next cycle came September 2015 and was long (10 weeks) and really bad in terms of intensity of pain and number of attacks. This time my neurologist put me on 2x naratriptan daily + 480 mg verapamil retard (2x 240 mg). After a week on verapamil it got better and in November the cycle ended. In 2015, 2016, 2017 and 2018 I was completely free of pain, full Remission, 4 years long. I almost forgot how bad the whole thing was. Until Early November last year when it all started with weak attacks at night time and worsened by beginning of December with really painful attacks 2-3 times daily. Again Naratriptan and verapamil, until Christmas. Now I am pain free again, so the cycle has ended, but there is this weak background feeling around the eye, that makes me worry. I have MRI on February 14th, I hope it will be OK and these are just the last signs of the cycle... I used Oxygen only once, when the pain was so bad, couple of years ago I went to the emergency and they put me on O2, which I think to remember helped me really. I'm thinking about taking for some 2-3 days again verapamil to see if this background noise will disappear. Thank you all for your suggestions
  27. igdc

    Just to put it in perspective

    I have or have had so many of those... Chronic pain sucks.
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