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spiny

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Posts posted by spiny

    Questions about lithium infusion

    in General Board

    Posted

    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! :wub: We love our supporters!! 

    • Like 2

    Neurology Disapointment

    in General Board

    Posted

    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. 

    • Like 3
    • Thanks 1

    Vasodilation headaches that form slowly over many hours

    in General Board

    Posted

    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? 

    • Like 3

    Bare with me

    in General Board

    Posted

    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!!! :wub: Fingers crossed that you come away from this trip with a huge smile and a newly found freedom. 

    • Like 2

    No Triggers

    in General Board

    Posted

    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. 

    • Like 2

    Airplane headaches!?!

    in General Board

    Posted

    Kat, with a script, you can call the O2 company that supplies you and set up to have O2 at your destination. They may have to refer you to the 'right' company for your destination. But, with a script, it is possible to have that base covered. :)

    • Like 3

    Airplane headaches!?!

    in General Board

    Posted

    Kat, you will most likely be fine with your dosing prior. If you have MM, take a SPUT with you to the airport. You can suck on it for a long time when you get on the plane. If you are concerned about traveling with one, you are not when it is in your mouth. That, along with caffeine in any form should take up any slack. No drinking booze.

    I suggest having coffee before take off. Having energy shots at hand when boarding! 

    I was terrified to attend the Dallas conference because I had to fly. :o Well, they really meant it when they stated 'We are only looking for explosives'. There was other stuff there if they were 'looking' for it. They were not. They did however have me open the bag to show them what was making the funny pics on x-ray! It was my Clustermask and regulator! LOL. 

    You may not want to take any alternatives and I do understand that. Do your preventative busts before! If it goes south while you are there, go to the firestation with your mask in hand and ask for some O2? It works many places in the states, so I would try for that solution there first. We all know how bad the ER can be, so that often ranks second. 

    That 'on landing' headache is from the increase in air pressure. I get a hit with the reduction in pressure.  So, take off. The plane does not have the same atmospheric pressure as we have at sea level when it is airborne, it is lower. Like a low pressure front moving into your area. If high pressure is a trigger for you, then yes, landing would be the time to be concerned.

    Have your preparations in order before and your 'prevents' packed for the trip. Slap on a smile and head out! Then report back here, ok? :wub:

     

     

    • Like 4

    Happy thanksgiving! Also checking in

    in General Board

    Posted

    Hey Kat, I felt the same way. Perhaps you can find a way to trust it and go visit soon!! 

    Pretty sure that Bosco uses seeds to deal with altitude changes, so that might be another layer of protection to make you more at ease. 

    Fingers crossed that you get it figured out and have lovely get-away soon. 

    • Like 3

    Happy thanksgiving! Also checking in

    in General Board

    Posted

    Hey Kat!!! Great news to read! :wub: 

    Flying: Carry energy shots or caffeine pills with you. Shots are tiny and you are able to board with them. Some will tote a few SPUT's in a convenient place to stick one under the tongue before takeoff. Others take ginger candy with them!

    The TSA's mean it when they say 'We're only looking for explosives' - they are NOT doing any drug checking from what has been seen, so no worries there really. I know some herbs were on that flight too. ;) 

    Many will do a preventative bust shortly before their flight day. Maybe 2-3 days? 

    If you get your O2 renewed, you can call the O2 server at the other end and have O2 waiting. It does require a script though. Take your regulator and mask with you! 

    I flew for the first time in over a decade to the Dallas Conference. I was terrified! But, it all went smoothly. I had shadows on the other end, but they were easily handled.  

    Best of luck and Happy Holidays!! 

    • Like 5

    First CH and very scared

    in General Board

    Posted

    Hi NIck!! 

    I suspect that many of us can recall exactly when we were first hit. None of the stories are happy.

    First step is to find your triggers. Booze is #1. Strike that off everything. Period.

    Get scans done. You have that in motion. If you have CH? They will tell you that your scan was 'perfect' or 'clear'. You are eliminating other bad stuff that is treatable, not getting 'we see'.

    You have no reason to think about chronic or episodic currently. You may not have CH or you may be starting out at a low level episodic. Currently, get the tests done. avoid booze, then access your situation. 

     

     

    • Like 9

    Signing off for a bit !!!!

    in General Board

    Posted

    Why thank you Jon!!!  Annie was one of the best!!! I wear baseball caps!! 

    I've not hunted in three years and we are overrun with deer. I want to find a local place that takes the meat and donates it to the needy. Venison is not a favorite, but jerky certainly is!! However it takes days to make it!! Suppose that this year, I have to get back to making jerky. :( Lots of work!!! and my hubby will need to buy a new dehydrator! He ruined mine. 

    • Like 1

    Omeprazole

    in General Board

    Posted

    I did a large amount of research on this now and I really could only find fewer than a hundred who suffered from major magnesium issues. They were hospitalized at the time as well.

    At any rate, I plan to continue taking the Omeprazole as directed by my Gastro. I can backtrack issues via annual blood work. Just keep up with the calcium and be sure to check PTH and perhaps C. Just keeping an eye on the things that Batch says to check: D, Calcium, and PTH will alert me/you if there is a new problem with the Omeprazole. At least that is my takeaway from my reading to date.

     

    Signing off for a bit !!!!

    in General Board

    Posted

    That is a work of art Shaun! And the lovely thing about titanium is I don't think it sets off the airport detectors at all. Neither mine, nor my girls cause any bells to ring when hitting the dang machine. 

    Jeebs, I'm with you! How did they keep miles and then decide to drive on the wrong side of the road? Wasn't that to leave the right hand free for a sword fight or something?

    • Like 1
    • Haha 3

    Omeprazole

    in General Board

    Posted

    Oriley, I have acid reflux and take Omeprazole for it daily. While I have been on this regimen for years now, 2022 has been the worst year I have had in decades. As in I have been in cycle since March. I am going to do some checking on this bit of new knowledge in my pocket. Perhaps I can double up on my magnesium? I am certainly going to check. This is the first year that I have not had direct sun to make D and have to rely on supplements, so naturally I am taking more D in vitamins. Perhaps upping the magnesium will help!! For long term use, my doc put me on Omeprazole.

    If your doctor said you need to protect your esophagus, keep taking what is required. You don't want to cause worse problems for your future.  

    • Like 2
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