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spiny last won the day on January 30

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  1. Yep and I was too! Currently, not so much Shaun. I could stop taking one pill and drop 20 pounds in a few weeks. But it is the one keeping me going, so I'll deal with the chub for now. LOL!
  2. Boy, a 3' dog can take up 6' feet without even stretching!! And they do claim the whole bed too by going sideways! Hubby's dog used to holler to go out in the snow to pee at night. He would get up, open the door, walk across the porch to open that door and find the dog gone! Back in his bed, in the middle and growling when he tried to get back in it himself!! At was a game to the dog. It was worse if he actually went out, because he did the same thing, but with snowy feet and tummy. Nice cold wet bed then! Buy an air mattress maybe? Those rocks are miserable!! How long will this need to continue?
  3. The lift-assist harness is awesome!! Twenty years ago, we used a log carrier under a pup to help my neighbor with their dog post hip surgery. That lovely corset would have been a huge help! She looks pretty bright eyed and bushy tailed Bosco! That is wonderful. May this operation bring Abby many years of pain free running for joy! Did she hog the bed all night? It looks like she intends to keep it to herself here!!!
  4. Kat, my Neuro prescribed it for me about a decade ago. He handed me the script with 'Ask on your site how this works.' My reply was 'I'm 15 pounds underweight. Where is your trash can?'
  5. This is sickening. Topamax is awful and not a frontline treatment to start with. He has tried 'everything' with you and appears to be just going down his list of 'headache meds' to hand to you. That is awful and no way to treat a human being. I too would ditch it. Likely do a taper for safety sake, but I am not sure that is required with Dopamax. I'm guessing that yours are one sided based on the surgery, the diagnosis and the neuro. Is that true? Right there with you on the sinus surgery. We are female, so it is migraine or imaginary to many Neuros, so next up is often sinus issues! And no, the surgery did nothing here either. Nor has it helped countless others. Just like having teeth extracted has not helped. CHF is right on the O2 for CH. If it is Hemicrania, then Indomethacin is the drug of choice. And Jeebs is correct in that you need a headache specialist neuro, not a regular one. Hemicrania can be ruled out by a test drive in the Indo. If that is not it, then you need proper, best results medication and O2 for killing a hit. Are these headaches constant at the same level of pain or does it rise and then recede repeatedly? At times and over the long haul, it can seem like one headache all day when actually it is many of them. That stuff matters in a diagnosis. Have you had an MRI to check for abnormalities in your noggin? That should be at the top of the list!! For CH, it comes back all clear. Question: Are you taking HRT? Has it been adjusted based on your personal needs based on blood work? A sudden drop in hormones can create big problems for us and some of those are expressed in headaches. Some OBGYN's went nuts several years ago and refused to treat patients with HRT since it did not improve bone density. What they did not know and what was NOT reported is that most of the 'placebo' patients dropped out since they were so miserable, so all results were invalid! The yanking of HRT for any woman into menopause was horrid.
  6. I suggest some caffeine or ginger for those shadows. Either can rid you of the annoyance of having one. Some use Excedrin Migraine as it has caffeine in it. I had a long reprieve too - ten years. Since their return, my cycles have been 6 months long. Unless someone dosed me with epinephrine and that prolonged two cycles - adding an extra two months to each. The beer test? I wait for two weeks pain free to go there, but that is me. Others will try it sooner with different degrees of success. ATB!!!
  7. Keep us posted Bosco!! Thinking of you two today.
  8. Nope. I have not thought that you silly man! I am old and do not waste my brain thinking about such stuff Shaun. I have enough to think about: Remember my pills, remember to eat, remember to feed the critters, remember to answer you, remember to devil Jeebs, remember to go to the loo, remember to finish my coffee.............................. Leave age out of it and get new glasses. LOL.
  9. Hi and welcome Dmiller! I would suggest that she may need to see a doctor who is more current on medications for CH today. If Boston is within reach, there is a doctor there, Dr. Brian McGenney who is great! He is a member of our group too. He is not here much, but I would suggest a call to him if that is possible with insurance and all. But he is great for CHers who can see him. I agree with the previous statements - Lithium is seldom prescribed at all now for CH. Much less an infusion of it. ATB!! And thanks for looking out for her and joining the group! We love our supporters!!
  10. Alicia, your experience was wretched. I would love to stick all these 'know it all docs' in a room and give them ONE cluster with only each other to look to for help. No meds, no phones, no O2, just each other. Then they can 'judge' the situation. You know, lie down, turn off the lights, etc. Preferably a dozen in a ten foot square room! Glare.......... Yes, it sounds like CH. Yes, they will try the migraine box no matter what if they were educated years ago, are arrogant, or are too big for their britches. My current Neuro did the same thing. I was livid. I had a return appointment and that is the first time that I made my husband go with me for a doctor visit. He made one statement: 'I want my wife back. She leaves at 8pm every night and enters hell with the pain.' The doctor smartly changed his 'diagnosis' right then. All because the MAN said X. Which is infuriating, but did get me what I needed. Not sure of your marital state, but if you are married, perhaps drag him with you for support? Should not be needed, but it can be. The funny thing was that I was referred to him by my NP for Clusters when I had to take too much carbamazepine, was seeing in triplicate and still getting hit. So, my doctor believed me, but the Neuro did not. The suggestion that you drive with a Migraine is nuts! People don't drive with them either! It sounds like she is more interested in seeing you without any relief and in a wreck to boot than out of pain. In addition, O2 does not help migraine. How did she explain that bit? The D3 Regimen is awesome!! It will slow the ramp-up, lower the max intensity, and for many it can prevent a cycle completely. Just get your blood work done on a regular basis and have your D3, Calcium, and PTH checked. If they are good, even if the D is 'high', you will be good to go. The other two items must stay in spec. I would not be surprised if the combo of the Pred Taper and the D3 did end your cycle!!! It has done that for a lot of people - the D3. Neurology Today has even done an article on the lack of D3 in their patients and the issues it causes. I have hardly had a cycle in years thanks to taking those vitamins. There are others who have written on this thread who are pain free due to it as well. Anyway, if she did read to keep up on Clusters, she would know this and she would know that the ratio has finally changed after decades of it being stated that Clusters are 8-9 men to 1-2 women. This is proving out to be false after finally being looked at. Currently ratio is about 6:4 and some are already saying 5:5! So, no, it is not attached to that chromosome at all. I went undiagnosed for over 30 years. I was given two meds in the beginning when this started in my early 20's, but after that, I was on my own. I got migraine 'shots' when it was to the point that I had to have a break from pain. But back then I was Chronic and low level. That mess would do nothing for me today. You did not ask, but for those shadows you can: Eat ginger or make ginger tea, drink some caffeine, try Excedrin for Migraine as it contains caffeine. I'm sure that others have suggestions to add to this short remedy list. Those are the methods that I currently use and remember. Getting old sucks! LOL.
  11. I bet that you figure that out!
  12. Interesting Miilos. Of course many of us use coffee or an Energy Drink for a Cluster, so I do get the point that sometimes too much coffee is required. It just leaves one feeling jittery and 'not right'. How many times a day are you needing caffeine? Can you tell us where you are located? Are you getting the pain only on one side or are you getting both? Did the tests include a MRI? How did your doctor come to the diagnosis of Vasodilation Headache? I normally see that with reference to a particular medication, not a stand alone disease. Not that it isn't there! It very well could be and I just have not heard of it. Here are some medications associated with Vascular Dilation Headaches: Many drugs can cause vascular headaches by inducing vasodilation. These include antihistamines, sympathomimetic agents, amyl nitrate, nitroglycerin, nicotinic acid, hydralazine, prazosin, pentoxifylline, cyclandelate, nifedipine, perhexiline, theophylline, aminophylline, terbutaline, and dipyridamole. This is the D3 Regimen. The original and it contains fewer vitamins to take, as it is not so focused on anti-inflammatory and histamine. https://vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708 It has helped many a cluster-head get out of pain and stay there for extended times. There is a more extensive one as well if this does not work. Are you taking any other medication that would affect your head? Like for heart issues or similar?? Next question: If you are only getting them a 'few times' a month, then why the concern over the caffeine? Does each headache require several cups of coffee to keep it at bay?
  13. With your plans as stated Kat, I don't see you needing the O2. If you do, head to the fire station perhaps? They are often more helpful than the ER. Considering where you are going, it may just be hard to put your hands on period! With that being said, your plan sounds solid. Perhaps pack some extra SPUT's just in case? I would get that Pred script filled here of course and keep it on hand. But I am prone to doing that just on general principles for emergencies. It pays to already have it before you need it! In the last 20 years, I have kept a taper pack on hand at all times for emergencies. It has saved my bacon more than once too. So, if there is a refill on that script, get it while it is still in date. Your doctor is pretty smart to give you the Valium. I am surprised that he gave you Xanax too, but hey, stash away what you don't use of either in a sealed bag and keep it for another time. Valium has a longer half-life, so it is better in that it lasts longer. Fill your scripts, do your busts, and have a ball!!! Fingers crossed that you come away from this trip with a huge smile and a newly found freedom.
  14. May you have a wonderful day too fulltime! My concern is that you do not have O2, which is the number one abortive out there! That is important enough that it should never be omitted! I am glad that you have found the methods that suit you to control your CH. I do wish that you had a decent, reliable way to abort your hits though. It is confusing that you say 'Clusters have no triggers', then state triggers that you personally have. You saying that these are only triggers when you are in cycle? That makes sense. But there are some things that will trigger a hit even out of cycle, so please consider those too. They can be devastating.
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