I met my dh last year, right after his CH cycle in July. Since I have been with him, he has had headaches, but no CH. He has been on verapimil for 8 months. He also takes methadone daily for his amputation of his leg. He only takes 10mg a day of methadone. These are all the meds he is on. He lost his BP meds and I didnt know 3 weeks ago. His headaches were daily, just normal ones. Friday he came home from work at his new job with a cluster. It went away on its own. He woke up Sat morning fine and smoked a cig on the way to work.  :( He went to the Er at 9am yesterday I stayed with him for hours and he came home, slept some and was fine. He ate a footlong salami sub and drank a pepsi. His CH started coming back at 11pm. He was screaming, crying, vomiting everywhere and I have never seen him like this. I had to get his mom to take him to the ER I couldnt do it, I am 7 months preg with twins and am pretty much on bed rest. I am scared. I have never seen him like this. He has been asleep all day long, for 15 hours. I am scared to go to sleep. He got a prescription for treximet, which works but we do not have insurance and 9 pills is 200 dollars and we could only afford 3. I am so worried about this. I cant work right now. I dont see him working anymore for a while. He could get fired this is a new job.WE cant afford meds and we cant afford for him to go to the ER two or three times a day either. I dont know what to do for him. I can barely take care of myself nowaday. I have been crying all day.

How long has it been since he lost his leg?

            Potter

He lost his leg 5 years ago. He is 34 years old.

Why would he take methadone for it?

             Potter

He has severe phantom pain every day. The methadone is for controlling the phantom pain. He has tried not to take it, and he is in pain if he does not take it.

You should look into oxygen as an abortive. Read the oxygen info tab on the left, it gives you all the nuts and bolts details. I've has CH for 32 years, used to have 90 minute attacks. With oxygen, I feel an attack coming on, 6-8 minutes later I am pain free. It's cheap, FAR cheaper then the trex, easy to use, portable, and kicks the beasts butt!.

Go pick up a four pack of red bull. Have him chug one down at the first sign of an attack. Many can abort or at least really reduce an attack this way.

For night time attacks, take 9 mg of melatonin...an OTC sleep aid available at vitamin or health food stores, 30 minutes before bed time. May have to adjust dose up or down, helps many avoid the night time hits. Give it a couple of days to kick in.

Add the following regimen, Calcium Citrate with Vitamin D, Magnesium and Zinc, up to 4 times daily, washed down with lemonade. Alters your arterial PH making him less succeptible to attacks.

Hang in there, you're both in a tight spot right now. :'(

Joe

Hate to break the news but narcotics are as worthless for phantom pain as they are for ch.  I'm an amputee with what is described as exquisite pain(phantom pain)  and have ch.

                       Potter

Wow interesting. I dont know, I am not him, but I do know that the methadone works wonders in preventing his phantom pain. When he does not take it every morning, he is suffering quite a lot. He still has some pain but nowhere as much as when he does not take the methadone. It really seems to help him. I guess every persons body is different? But strange that you suffer CH and you are an amputee. I wonder if there is any connection...or did you suffer CH before you became an amputee?

Guiseppi wrote on Nov 21^st, 2010 at 5:22pm:

Add the following regimen, Calcium Citrate with Vitamin D, Magnesium and Zinc, up to 4 times daily, washed down with lemonade. Alters your arterial PH making him less succeptible to attacks.

How much of each (calcium citrate with vitamin D, magnesium, and zinc) do you take with the lemonade?
And, where do you get the melatonin?

600 mg of calcium with D, 250 mg magnesium, 50 mg zinc. Melatonin can be bought over the counter at vitamin, health food stores, or any decent size pharmacy.

Joe

Strong Mama wrote on Nov 21^st, 2010 at 5:28pm:

Wow interesting. I dont know, I am not him, but I do know that the methadone works wonders in preventing his phantom pain. When he does not take it every morning, he is suffering quite a lot. He still has some pain but nowhere as much as when he does not take the methadone. It really seems to help him. I guess every persons body is different? But strange that you suffer CH and you are an amputee. I wonder if there is any connection...or did you suffer CH before you became an amputee?

  Even though the brain perceives it as real phantom pain isn't
real.  No blood no foul.  On the other hand ch is very real and is treatable.  Joe's post is spot on.

                  Potter

Thank you so much for the info. I have more info myself now. This is only the second cycle he has had. So one cycle a year, so far. He suffers from insomnia, and hasnt been sleeping well up til the last month, so I think that along with the fact that he stopped his varampimil because he misplaced it contributed to this cycle. He has been having shadows, is that whats its called...he had been waking up in the night for the last two weeks prior to this cycle with a headache, somewhat severe but would go away with OTC meds. I went out and bought melantonin yesterday. He was taking magnesium, I had him on it for sleeping but he stopped taking it, he said it was giving him indigestion really bad. O2 he says barely helps him. But he has been only given it a handful of times not as an abortive but while he is in the severe of it. He is meeting with his neurologist today. He woke up after 18 hours of sleep yesterday and I made him eat very lightly some eggs and toast and fruit and yogurt and then he felt his headache slight but I made him go ahead and take a treximet and some melantonin so he could get some good sleep. I am so grateful to this site. I am also going to get him to go to the chiropractor. Because he just got a new leg fitted and it is a little higher up than his other leg I wonder if this is straining him.

Hi Strong Mama and Welcome!

I am a Ch'er too and I also had issues with the Magnesium and Calcium supplements after speaking with another member here (Batch) I am trying Fish oil (Omega 3) Supplements and Vitamin D3 which he has had some luck with, so far.  Hubby should take 3 Omega-3 and 2-3 vitamin D-3 per day this may take a bit to start easing back on his hits so have him stick with it. 

I have been doing this vitamin regiment for a week now and am starting to see some improvement.  I have CH year round but this is a particularly hard time of year with it for me.  I have been having 3-4 hits per day for about a mo. now which is about 3 times my normal hits.  The end of last week I actually skipped a day and didn't have a CH hit. 

I hope this is some help to your hubby and my hat's off to you for being such a good supporter!

An important part of oxygen is getting on it as soon as you feel the headache coming. If I wait until I'm in the throes of an attack, 02 won't work for me. A delay of even 3-4minutes in starting the 02 can double my abort times. That's why going to the er for 02 would be worthles for me.

Joe