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funk_mandy

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  1. That seems to be what's happening to him.... Verapamil at first was like the miracle drug that made them go away. But he's had to up his dose and can't wean himself off of it without the headaches coming back with a vengeance. Thank you for the advice. He got off of the D3 regiment due to his doctor thinking his D3 was too high, but I think I'm going to tell him just to get back on it. It can't be any worse for him than pumping himself full of Sumatriptan every day.
  2. CHFather, This is the mask we bought for him: http://www.clusterheadaches.com/ccp8/ I will ask him to look into welding oxygen. The last he looked into getting an Rx for oxygen, our insurance wouldn't cover any of it, and it was over $100 per canister. I will also reach out to Batch and get his thoughts on being too high in D3. My husband's sister is a nurse, and she told him it would be about impossible to do any sort of damage to himself on the D3 regiment, but his doctor was pretty adamant that he cut down on the D3. If he can get to where he's been off Sumatriptan for 5 days, I'll have him try the MM again. I think he tried them twice over a several week time period. But does Verapamil block the MM? And we just had a new pharmacy built in the next town over that will carry vials and syringes for him to get the Sumatriptan at a cheaper price and lower dose. We hadn't had any luck getting one of the big chain pharmacies to do that previously. He sees his primary care doc again on Wednesday, so he can get a new script for it to send off to the new pharmacy. Thank you for your advice and words of encouragement. My husband isn't techy, so I'm trying to research and get as much info for him as I can. I sure wish someone would come up with a cure for this!!
  3. Has anyone else gone from episodic to chronic? My husband used to be on a pretty reliable schedule of being in cycle from October - May, then be in remission for 1.5 years before starting back up again. For some reason, he has not gone into remission now for almost two years. He should have come out of cycle in May of 2017 but never did. If he backs off of his Verapamil, the headaches are back within two days. I'm worried this is going to be his new normal. It used to be he could remain somewhat positive during a cycle because he knew there was an end coming to it. Not he's having a very hard time dealing with it and has sunk into somewhat of a depression. Another odd thing happened to him the other day: he got what claims was the second worst CH he's ever had, and after giving himself a Sumatriptan injection, he said his hands and fingers when totally numb for a few minutes. Has anyone else ever experienced that? It's frustrating that Sumatriptan injections seem to be the only way for him to get any relief, as I have read from others' experiences that they get rebound headaches from them and think that their cycles actually last longer when they're using the injections. He's had very mixed results with oxygen. It doesn't abort the headaches, only dulls the pain a little. He has the correct mask but can't seem to find an affordable source to get tanks of oxygen. He tried the D3 regiment last fall but stopped after getting blood work done because his doctor told him his D3 levels were way too high. Has anyone else had to stop the regiment because of that? He also tried mushrooms with no help, although maybe he needs to take it more often to get the results. I feel so overwhelmed by all the information out there that I'm not even sure we're doing any of this correctly!
  4. Dylan, so sorry you are going through this. I don't get CHs, but I'm married to someone who does. It makes me mad hearing people scoff at how we must be overreacting about it or trying to compare themselves to him. Every time he or I tells someone that he gets cluster headaches, the response we get is always "Oh I know how he feels because I get terrible migraines" or something to that affect. His parents are actually the worse offenders and finally stopped trying to call his headaches migraines after I sent them a youtube video of someone suffering through one. My husband and I have just gotten to the point where we don't really tell people what's going on because it's not worth the aggravation or frustration of trying to explain to people what CHs actually are.
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