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Everything posted by spiny

  1. With the O2 Cluster Mask, you will receive a mask and a tube. The tube is used by those who cannot take the pressure of the mask on their face during a hit. The tube, you stick in your mouth and inhale through your mouth and exhale through your mouth or nose. Just make sure you are inhaling strictly O2 - through the mask or tube. No outside air in at all! Pure O2 is the best way to kill a hit. That is why a concentrator does not work well. It is not pure O2.
  2. spiny


    That is a rolling tally for a certain period. So, if you are not posting very often, you don't get the likes and such that create the tally. Since your posts are well loved, you get a lot of 'likes' and stuff! Heal well, okay? You are having to deal with a lot!
  3. spiny


    Sorry Brain, what do you mean by 'bumped'?
  4. Please study those things before you call them pathetic. You are showing a bit of hard ignorance. Something that works and is legal and inexpensive is pathetic? No. It is a gift to sufferers. You evidently don't know much about the condition members of this board deal with. Lots of horrid pain? Yep, you get that. The fact that different solutions work for different people? You don't seem to grasp that part. Apology accepted. Now, please refrain from slamming other proven methods of treating CH. igdc started a valid thread about the flu and Ch. You have hijacked that thread. Is that
  5. Bee, I have removed the posts containing info not suitable for an open board. Please do not repeat those postings and videos on a General Board thread. If you have CH, we are here to help. If you have an agenda? We aren't interested.
  6. I have not had an issue with Asthma inhalers affecting my CH one way to the other. I still use Albuterol daily too.
  7. spiny


    Hugs Brain!!! Keep up the fight. You definitely know how to do that!!! Love you!
  8. Have the dentist give you medication with NO epinephrine in it!!! That is what will kick off your head. He might balk, but let him know what it can do to you!! My dentist fights me on it, so I only go when out of cycle and take Starbucks with me to drink at the first sign of a hit. ATB!
  9. You most certainly are still family here Seigfried! No need to bail on us.
  10. Well, that sucks Seigfried! Many say that Topamax makes them feel 'dopey'. That seems to be the most common complaint. And I am sure that is dose dependent. It has been nicknamed Dopeymax by some. It does help some CHer's. I was given a script for it years ago. One of the main side effects is weight loss. Being underweight at the time, I declined to take it. With most people at home, I suspect that 'dopey' might not be a problem. I do not recall how much I was to take per day now, sorry! Are you taking the full D3 Regimen or just D3? The full thing is what works for me.
  11. Happy Dance!! That is such great news!
  12. I was allowed Benadryl when I was pregnant. Getting your O2 optimized will be awesome for you most likely. A bit of work to abort, but very much worth the effort! And a great way to go when pregnant. CHF has covered that well, as he is prone to do! ATB and welcome to our community!
  13. Well, that negates my existence! I had 'mild' CH for years in my 20's. On time every time, but never the level of hits I suffered decades later. Take what she offers if you want to take it. Or stick it in a drawer. See the neuro and get the proper attention that you should be receiving now! Hugs!
  14. Here ls a method I used with my Neuro. He always has me seated toward the window light and then does the pupil test. Well, they contract at about the same rate. Two years ago, I turned off his lights and told him to look at my pupils. The CH side does not dilate properly in low light. And it takes quite a while to return to almost normal post cycle. He was giving me a bit of a hard time and wanting to treat for migraines. That changed his mind. The other pupil was huge and the CH one was 1/2 the size of the normal one. 'Oh, you do have Horners!' Ah, yes I do. My eye does not droop because I ex
  15. spiny

    Hey Batch!!!

    Thank you very much!!
  16. Could you please post the info regarding the Wiki link to your D3 vitamin regimen here? I am covered up at home and want to send it to my Neuros' nurse. The technical stuff should help with non-believers! Many thanks!
  17. Hello Greeneyes! Long time no see. Verap lowers your blood pressure. Have you checked yours since the increase in medication? It may be getting lower than is comfortable for you. You will adapt to a certain degree, it may be a limiting factor in how much Verap you can take. Low blood pressure makes me tired. My max on Verap was 240mg/day. Being nocturnal, I took mine in the afternoon and twice through the evening and night. It seemed to help with the low energy caused by the low pressure. The Venlafaxine is for depression, anxiety, and panic disorders. And it can have a side affect
  18. Yep. Talk to the doctor doing the anesthesia. I have now done that for three surgeries. They did not use Epi in the mix and I had my mask and 15lpm running and handed to me first thing. Once it was needed right then too! They now have it in my record in two places and I like that. They may make an odd face when you tell them to NOT give you any pain meds, just O2 please. Not what they expect to hear at all.
  19. Thanks James, for posting this! Yes, just for others to read and consider, it has value. It is wonderful that you are getting relief! Where did you place the pads on your neck? How far up the scale did you go with stimulation? GammaCore has not been the winner we hoped for and it is invasive.
  20. If the anesthesia contained Epinephrine, that can start the hits. Or a cycle. For me, I can bring on one by stopping the D3 for two days. I would return to loading and taking the full D3 Regimen. I would add the Benadryl too, if you are not already taking it. You need to know your blood pressure before upping the Verap. It is best to take that at home where it won't get elevated due to being at the doctors. Sit quietly for ten minutes, don't cross your legs and take it. You will get a more accurate reading of what is normal for you. Talk to your Neuro about that and ask him about upping
  21. An infection means dead white blood cells. AKA pus. It causes pressure on surrounding nerves and blood vessels. As it goes away, some improvement should follow. They have not sealed it yet have they? I too would hit it with everything in my arsenal. New activity should be squashed. My worst mess caused by Epi gave me ten hits in 24 hours post surgery to repair cut nerves and tendons in my thumb in 2018. The nerve block was supposed to last 12 hours at least. It was alive in an hour and I was still on my way home with no pain meds given on departure and script still over an hour away
  22. Lidocaine, the anesthesia most commonly used has Epinephrine in it. That is the bug-a-boo. It will set off your head! It shrinks the blood vessels so he has less bleeding to cope with for your dentist The best solution is to let your dentist know and request an anesthesia without it. Some buck up as the deadening effect is not as pronounced and a dentist can whig out over that. I am going to move this to the general board for the good of all Mark.
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