spiny

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.

Happy Dance!! That is such great news!

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!

Keep up the excellent work Tony!!! <3

Thank you Tony! I look forward to more!!!

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!

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 exercised the muscles to hold it open so much one year that I now have brow wrinkles on that side only and the eyelid is more wide open than the other one! It had gotten so bad that I could not read without killing my neck looking down. So, it became a daily project. He also was running with the normal runny eye, runny nose bit. Well, now I seldom get that, but the CH side of my head sweats profusely during a hit. Try it at home first. If you are still having CH, it should show up that way. It beats me how they just look at contraction and not expansion, but they do. And there is the old Nitroglycerin trick. They use it sublingual for Angina. But, for a CHer, it will bring on a hit. Not a migraine, a cluster. Painful way to go, but provides proof. She needs to rethink or catch up on her CH knowledge!!!!

Thank you very much!!

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!

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 of tiredness and sleepiness. Also it can cause Serotonin Syndrome when mixed with some drugs. Verap was not listed and surely your doctor is aware of this possibility. Glad that you are in a better place than several years ago!!!

Smarty!!!

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.

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.

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 it and perhaps doing a Pred. taper at the same time. That can often help a lot. The Pred usually stops the hits for a few days, so the Verap can build up in your body without you suffering in the meantime. If you can't get O2, consider going the welding route. It is the same O2. Perhaps a friend has a welding set-up? You can also sleep in a recliner with your heart above our head. Don't know why, but it helps a lot with nocturnal hits. You likely will wake sooner and have better results in aborting the hit. If it is coming at one particular time, you might try a Redbull 1/2 an hour prior to that time. Or even go ahead and take the Trex as a preventative. That helps some.

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. The hits began about an hour after that and were severe.

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.

So happy that you are in a much better place. May your bust be a huge success! I wonder if the meds were messing with the D3 Regimen? It would be amazing if this non-pharma aid were to work for you now. Let us know if you see the magnolias!

Hey Vipul. I had sinus surgery in the 90's for sinusitis and deviated septum. I was having constant sinus infections. Post surgery, it would bleed with the slightest increase in pressure due exercise or heat. I had to wear a mask in welding class to avoid bleeding on my work. It would gush very quickly. At that time, I was in full remission. The bleeding continued for about 10 years post op. So, the sinuses are opaque. It was suggested by my primary care doctor to have repeat surgery many years later. That was not going to happen. It can be a rough surgery and recovery is longer than one would think. This was after I had had CH for 20 years. I did not have my CH reactivate till almost six years later. The trigger? I moved to a higher elevation. Currently, I cringe at the thought of another sinus surgery. My CH is under control and I don't want my head messed with thank you!!! If you think it will benefit you, then by all means have the surgery. But do not expect it to kill your CH. Many sufferers have had sinus surgery like mine for their CH on their docs recommendation. I do not know of a single person that it helped. Batch has already covered the rest for us. I do really wish that sinus surgery DID help with CH!!! Here, they are hot to jump on reaming out your sinus's for you. If you are concerned, you can take the results to an Ear, Nose, and Throat doctor. That is their area of expertise.

Very interesting. So, you have just one of the new patches? I wonder how much is actually in the dose? Thanks for enrolling and furthering study on this!!!! We all benefit when anyone volunteers to further knowledge!

Yes you should if you have not had a scan done yet! Usually a patient gets one with their diagnosis in the US. For CH, it should come back as 'Nothing found' basically. It is to rule out 'other' stuff being the issue and causing the CH like symptoms. Have you looked into the D3 Regimen yet Vipul?

Wow! Congratulations! Looks like you bent the right ear to get the mess fixed.

I don't recall if it was 2 weeks pf or a month in the old stats. Anyway. If it was a month, they changed it to two weeks. And vice versa.

I can say that I understand dumping it all. That is the only way to find out if it is truly helping or not! Personally, I would go back on the D3 Regimen. Just because it is good for you and does not interfere with other stuff to my knowledge. It is wonderful that you feel better minus that stuff, isn't it? Best of luck this weekend!!!

Thankfully the medicos are learning that CH affects women about as often as men. Many women were labeled as having migraines when actually they had CH. And then they are prescribed a Triptan in pill form, which is pretty useless for CH. Takes too long to kick in. Your move and the return of CH has reported by many. I had the same thing happen 16 - 17 years ago. I had been PF for 10 years! It is disgusting when it happens. With no O2 at the moment and you being in Ohio, you could truck it outside in the cold and do your deep breathing and forced exhale there. It should provide some relief. Sometimes you can do the breathing with just air and benefit too. Cold does seem to work better. I would suggest you hit the caffeine first! Some put their feet in water as hot as you can stand it. These methods work best if begun early! Another idea is to sleep in a recliner, just keep your head above your heart. It is good for night time hits. As an added bennie, you will wake sooner if you get a nocturnal hit. Another thing: If you can't get O2, like many of use, you can use a welding set up. Welding tank of O2 and your regulator and mask. The non-rebreather Clustermask is the BEST! Welding O2 is safe to use. I hope that some of this helps. I definitely would begin the D3 Regimen ASAP! It is easy, no doctor needed, and all good for you stuff. All the best! We are here to help you get to a better place. I changed my original post to you and deleted most of it after I did a bit of research. It was another poster that I saw, not your posts! Apologies.

Caffeine does not trigger CH. From my personal experience and the people here. It is a very effective aid in moderating or aborting a hit for CHers'.