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Chaotic513
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Help please
« on: Dec 30th, 2007, 4:44pm » |
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Hello, I am new here. My father has been suffering from clusters for a few years now. They have been gone for awhile but now have come back. He is taking calan at the time, although is dose was lowered. He does not get to go to the dr. until Friday at which time he will probably be sent to a neurologist.
In the mean time, is there anything I can do for him. Or any home remedies he can try. I can't stand to see him like this, it's breaking my heart.
And advice or suggestions?
Thanks so much.
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Travis1980
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Re: Help please
« Reply #1 on: Dec 30th, 2007, 4:57pm » |
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Hello,
I'm sure your father appreciates your concern and help. This is a peronal decision, but if it were me, I would be on the way to the emergency room to get prednisone, verapamil, O2, and Imitrex injections. This is the only combination of meds that has worked for me. Depending on your insurance, I know that cost can be an issue, especially if Dad is a little stubborn, but I would try to convince him. If he will not, try drinking at least 4 cups of coffee immediatly upon waking and every couple of hours after at the slightest bit of pain. Also, ten minutes of jumping jacks can abort a headache sometimes for me. Good luck and take care.
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RichardN
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Re: Help please
« Reply #2 on: Dec 30th, 2007, 5:39pm » |
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Hi Chaotic . . .we'll try to help
If my feeble brain recalls correctly, calan is Verapamil, which was my salvation (preventive) along with 02 (my abortive).
How old is your dad? Any cardiac problems? I'm 60, came here at 55. I can't take Imitrex or any of the other sumatriptans . . . which are vaso-constrictors and work by constricting the dilated blood vessels which are putting pressure on his trigeminal nerve, causing the pain. If he has artery blockage or high cholesterol (as I do), Imitrex can be dangerous . . or fatal. 02 is my only abortive and I can usually kill the beast in minutes if used early-on in the attack . . . works for more than 70% of us.
You will need to copy the 02 info off this board and take to your dad's doc . . . and don't be surprised if he resists giving the script . . . to most doctors, 02 as a pain abortive is an alien idea. That's why it's very important to take the material with you. Oxygen IS a recognized abortive for CH.
Heat or cold (we're all different) on the face/neck . . . vigorous exercise helps many.
You said they have been gone for awhile . . . how long as he suffered with CH and do you know if he's ever used any meds that did (or didn't) work for him. How long have his cycles lasted in the past?
Anything you can pass on will help those on this board help him. As a supporter, you well know the agony these things bring on . . . not easy to watch a loved one go through.
Does he get hit mostly at night, or day and night?
Let us hear from you (and him) soon.
Be Safe, PFDANs
Richard
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samborambo
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Re: Help please
« Reply #3 on: Dec 30th, 2007, 5:57pm » |
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I would try to watch what he eats. To start, I would avoid any and all foods containing MSG. MSG also has many aliases that are used:
Glutamaic Acid, Carrageenan, Natural Flavors (this one I'm not 100% about but i'd avoid it just to see if it helps; its in 99% of bottled drinks i've come across, try to have him drink just water and coffee) Hydrolyzed Soy Protein and maltodextrin. I personally find that if I consume any food with any of the above ingredients, even in the most minute amounts, my cluster frequency and intensity increases dramatically. I also suffer from chronic migraines so i'm not sure if that plays a role. That being said i'm still a chronic cluster head who hasn't had any respite for the last 2 and a half years so it hasn't made my attacks cease by any means but I know that when I modified my diet this one was one proponent that I think had a big impact on my activity.
There is also a herbal remedy that would be worth a shot, its called Kudzu but i'm not sure how safe it is depending on your father's medications and state of health.
He's lucky to have a kid like you. When he's being attacked just always remind him that the pain will end. Also try to keep him calm, the more aggravated he gets, the worse the pain gets...I know its easier said than done but it is a key point. Hopefully your doctor doesn't give you the gears and you are able to get him some oxygen. That is by far the best tool he'll have to help him cope.
All the best,
sam
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BarbaraD
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Re: Help please
« Reply #4 on: Dec 30th, 2007, 6:08pm » |
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O2 at a flow rate of 15 liters per minute with a NONrebreather mask is the choice of most of us here. It has been accepted as an abort for CH. COpy the info on the left side and take it with you to the doc.
Predisone taper works to get a prevent in the system. Choice of most are verap, lithium or topamax.
Aborts are the triptans or ergotomine.
Depending on his medical condition and what he can or cannot take.... (we need more info)
Melatonin at night helps get thru the REM sleep (when most night hits occur) 12-15mg before bedtime.
Red Bull (energy drink) or coffee at first sign of CH helps a lot of us abort one. Caffeine is a vaso-constrictor.
Heat/cold (each of us is different) helps some of us.
Remember we're all different and different things work on each of us differently, so there's no set ONE thing that will work for all.
If you can, get your dad on here and let him know he's not alone in this. We've mostly all been right where he is and we do UNDERSTAND what he's going thru. And we are here to help.
Hugs BD
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vietvet2tours
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Re: Help please
« Reply #5 on: Dec 30th, 2007, 6:34pm » |
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Oxygen.
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George_J
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Re: Help please
« Reply #6 on: Dec 30th, 2007, 6:43pm » |
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I'm sorry your father has been fighting these--it can be a very distressing thing to see.
You asked specifically what might be helpful in the short term--home remedies and such--that he could use in the short term until he gets the medical help he needs on Friday.
1. Cold. A bag of frozen peas, or some ice wrapped in a wet cloth. Hold it directly against his face--and/or on his neck if he gets neck pain. It really does help to reduce the immediate pain of an attack, as long as it's held in place.
2. Get some energy drinks--Red Bull, or the like, with caffeine and taurine--have him slam them down (not sip) at the first sign of an attack. For some, they'll abort a headache completely. Strong coffee, or anything else with a lot of caffeine is also helpful.
3. If you are anywhere near a fire station when an attack occurs, take him there and ask the paramedics if they will give him oxygen at 15 liters per minute with a non-rebreather mask, or with a demand regulator. Lesser amounts of oxygen are ineffective. We've found that the paramedics at fire stations are often willing to help us in an emergency. It will also give him valuable information--if he's one of the 70 percent of us for whom oxygen will completely abort an attack, then he'll know this by the time he sees his doctor or neuro.
My greatest respects to you--nothing is more valuable to a clusterhead than a supporter, and it sounds as if you're one of the very best kind.
Again, I know that it is a difficult thing to see, but just remember--it won't harm him permanently, and soon enough he'll be back to himself again. Try not to worry.
All the best,
George
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Ah! The foreigners put on such airs
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Annette
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Re: Help please
« Reply #7 on: Dec 30th, 2007, 7:20pm » |
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Has your dad actually been to see a neurologist in the past, gotten a MRI to rule out other problems and got diagnosed properly as having CH ?
Before engaging in trying any treatment, a proper diagnosis has to be confirmed by a knowledgable doctor and other tests done to rule out other nasties.
There are other forms of headaches that are similar to CH and using the wrong meds for the wrong thing can be fatal in some cases.
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Chaotic513
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Re: Help please
« Reply #8 on: Dec 30th, 2007, 7:47pm » |
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Thank you so much for all the replies, and helpfulness.
My father was diagnosed with cluster headaches. He was diagnosed 20 years ago. He has been to the Cleveland Clinic years ago and seen a Dr. Kunkle. He hasn't had them in a couple years this severe though.
He did go to the hospital years ago and they gave him oxygen that didn't work he said. But they might not of gave him enough back then. All I know is he is crying and in pain when he has them. And he is looking for anything to try to help ease the pain. And I feel helpless. We are going to call the doctor tomorrow to see if we can get him in sooner. She won't give him anything unless she see's him, he said. And he isn't scheduled till Friday for a doctor. My father is 70 and had angioplasty done in 1989, no problems with that since then. He usually gets them in the evening, they wake him up at night. He does get them in the day, but more night. And they usually last for 45 minutes to a hour. He takes calan 180 mg. and he takes a couple other pills but nothing for the cluster. He also was in the hospital at the beginning of the month with a small bowel blockage and they didn't give him calan during them 4 days. They found a aneurysm when they did the ct scan for the blockage that they are keeping a eye on. And he goes tomorrow for another scan at the back of the knees to make sure there is no aneurysm there since the surgeon thought they felt a little lumpy. I went out to the store and bought some red bull.
We are going to try the red bull tonight and maybe the hot shower. I told him to come on and talk to everyone, but he is a very slow typer, and he appreciates all the replies and suggestions. Thank you again. And if you think of more I will be checking in. Take care.
Doris
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Chaotic513
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Re: Help please
« Reply #9 on: Dec 30th, 2007, 7:50pm » |
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Oh, Im sorry, one more question. A couple of you posted for me to print up about the oxygen to take with us to the dr.
Where do I find that at?
Thanks again 
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Annette
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Re: Help please
« Reply #10 on: Dec 30th, 2007, 8:10pm » |
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If your dad is 70 years old and has had angioplasty I presume he has heart problems, right ? Also they see an aneurism while they scan the bowels so again I presume he the aneurism is in the aorta ? Did they ever work out what caused the small bowel blockage? Now the docs also think there maybe an aneurism behind the knee? It seems your dad has many complications and major heart disease as well as peripheral vascular disease.
He should be seen by a proper doctor and not be trying meds suggested here. It is too risky. Is he a smoker? He has had a bad lung? Does he suffer from emphysema ? If he does then even oxygen can be bad for him. He shouldnt be trying the Red bull either, too much caffeine can be bad if his heart is weak and if his electrolytes are not stable. Taurine can make some bowel problems worse too.
If he is in a bad way and cant get to see his GP right away please take him to the hospital.
The only thing that is 100% safe for him given his condition is ice or heat to the back of the neck. Check to see if you can feel a lump on the back of the neck which is hot and tender especially when he gets hit. Otherwise try hot/cold shower and see which one helps more.
If he gets hit a lot at night then melatonin can help but even that should be checked by his GP and it may take a while to start to work.
What are the other pills that he is on ? What is his blood pressure like?
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Chaotic513
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Re: Help please
« Reply #11 on: Dec 30th, 2007, 10:06pm » |
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Oh my goodness, he has drank the red bull and two cups of coffee. It's not working. He is in pain. Although I do not think he has major heart disease. He had a stress test done last year and nothing was said. He does have emphysema but has not smoked for 10 years. He is not on medicine for it, and recently had a pulmonary function test which showed mild emphysema. With a moderate diffusion. The anuerysm was found thankfully on a ct scan for something else. The arteries behind the knees will be checked tomorrow. He is on medicine for his blood pressure, cholesterol an aspirin a day and fish oil supplement and multi vitamin. I must go I will check in tomorrow or later, thank you for helping.
Doris
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George_J
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Re: Help please
« Reply #12 on: Dec 30th, 2007, 10:31pm » |
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on Dec 30th, 2007, 7:50pm, Chaotic513 wrote:Oh, Im sorry, one more question. A couple of you posted for me to print up about the oxygen to take with us to the dr.
Where do I find that at?
Thanks again |
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http://www.ouch-us.org/medications/oxygen/o2links.htm
Print out the pdf file--the supplemental guide.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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txbeck
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Re: Help please
« Reply #13 on: Dec 30th, 2007, 10:32pm » |
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Ice, ice, ice!
Sounds like your dad is in about the same shape I am. I had an iliac bypass 15 years ago, but am now scheduled for another angiogram, and probably stents if not more bypass surgery. At least so far they haven't found an aneurism, just serious blockage. I just hope I get through it all before CH calls on me again.
Lots of ice packs do help somewhat with the clusters. I keep several in the freezer so I can rotate them frequently. Melatonin also helps reduce the hits and does not seem to interfere with blood pressure or circulation or other meds.
Bless you for being there.
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Becky
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Chaotic513
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Re: Help please
« Reply #14 on: Dec 30th, 2007, 11:38pm » |
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Hi,
Becky my dad's aneurysm says 2 cm. anuerysm in right iliac so it sounds like yours bypass was in the same place. The vascular surgeon said were going to watch it though. Worried me, thinking they should do something about it now, but I guess they watch many. And he is highly recommended. Keeping my fingers crossed the dr. can give him something to help him by tomorrow and not friday for the clusters though. I just can't believe after all these years there is not much help. There needs to be more research or something.
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Annette
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Re: Help please
« Reply #15 on: Dec 31st, 2007, 12:07am » |
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If your dad has emphysema and moderate diffusion ( ie fluid in the lungs ) he shouldnt be using 100% oxygen at high flow rate which is what is needed to abort CH hits. Doing so is very dangerous for him it can make him stop breathing.
Ask the docs about other forms of preventive such as Lithium, Topomax, Epilim , Neurontin etc and about Zyprexa for abortive.
For now only ice or heat is safe for him.
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nani
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Re: Help please
« Reply #16 on: Dec 31st, 2007, 12:19am » |
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on Dec 31st, 2007, 12:07am, Annette wrote:
If your dad has emphysema and moderate diffusion ( ie fluid in the lungs ) he shouldnt be using 100% oxygen at high flow rate which is what is needed to abort CH hits. Doing so is very dangerous for him it can make him stop breathing.
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Actually, my dr says this is not a problem until you're in late stage emphysema. I find that staying at 15 lpm for more than a few minutes hurts, but I've learned to maximize effectiveness vs pain by doing the following:
I take my first 10 -12 inhalationss at 15 lpm
Then, I turn it down to 11 0r 12 lpm, and continue huffing until I feel some level of relief.
Then, I turn it down to 7 for a few more minutes to hopefully finish the abortion of the attack.
What is most important for him is to really exhale well between inhalations.
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Chaotic513
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Re: Help please
« Reply #17 on: Dec 31st, 2007, 12:22am » |
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Hi Annette,
The low diffusion for my dad isn't fluid, the diffusion stands for how well the oxygen passes from the air sacs of the lungs into the blood. Which is usually low in emphysema or lung fibrosis. The little grape like sacs in your lung get damaged (aveoli, i think that's how you spell it) collapse. And they can't transfer the oxygen and carbon dioxide right. Which then will give you a low diffusion. When he was in the hospital at the beginning of the month for small bowel blockage they gave him a chest xray which came back as normal lungs. I thought that is weird it should show hyperinflation. But only the breathing pulmonary function test showed emphysema. He is sleeping now, but I will be back on tomorrow and let you know all the medicines he has taken. Since they have come back he is begging for any type of help. Now I wish i would of went in the medical field.
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Annette
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Re: Help please
« Reply #18 on: Dec 31st, 2007, 12:43am » |
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Thanks for clarifying Chaotic. Do you know what his lung function test actually said about his lung capacity ? what is the value of his peak flow volume, FEV1 and FVC ? I would still be cautious and double check with his docs about using oxygen for him though.
Thanks Nani for sharing your experience and how you use the oxygen, thats is very helpful.
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maryo
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Re: Help please
« Reply #19 on: Dec 31st, 2007, 9:33am » |
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I am a paramedic & nursing student with 18 years experience giving oxygen. Only once did I have a pt for whom oxygen was a problem. He had real, real bad lungs, was very low on blood oxygen, anxious and fighting us. The O2 made him stuporous after about 5 minutes, which worked for us in controlling him, but he didn't stop breathing. There used to be a lot of fear about giving too much O2 lest the pt stop breathing, and some of this thinking lingers among nurses and doctors, but it occurs rarely. Still, it's good in this case for the doc to prescribe the O2. I had to have an Rx and I'm healthy. What happens to "chronic lungers" is that what drives them to breathe switches from high CO2 to low O2 (in theory). So if you get their O2 levels up for a person with severe lung disease, it removes their drive to breathe. A tip off about these kinds of people is they're on supplemental O2 anyhow, and it's only the worst of them that will do badly with O2.
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thebbz
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Re: Help please
« Reply #20 on: Dec 31st, 2007, 1:25pm » |
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Tell Dad to hang in there. He is not alone.
For you: CH will not kill you. Relax and be there for him.
Try the 02 again with proper administration.
Keep up the good work. Your Dad is a lucky man.
thebb
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Pinkfloyd
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Re: Help please
« Reply #21 on: Dec 31st, 2007, 2:20pm » |
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Thanks to Maryo and Nani for the correct info on 02 for people with lung disease. If people with mild emphysema couldn't use high flow 02, half the people on this message board couldn't use it.
Good luck finding something quickly, that helps, Doris. I'd be on the phone until there was a script for 02 available. I'd also be asking about a prednisone taper to see if it's ok with his doctors and if so, get that asap. That would probably be the quickest help preventing attacks while you all (you, Dad, the doctors) decide upon a plan of attack. There are some things that can help, Doris, but it often takes a little pushing from the patient and support system (you) to get the urgency across to the medical folk. When they aren't feeling the pain, or even seeing the pain, the urgency isn't always there.
Tell Dad that there are a lot of people out here pulling for him.
Bobw
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Annette
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Re: Help please
« Reply #22 on: Dec 31st, 2007, 5:39pm » |
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on Dec 31st, 2007, 2:20pm, Pinkfloyd wrote:. If people with mild emphysema couldn't use high flow 02, half the people on this message board couldn't use it.
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I wonder if half the people on this message board is 70 years old with heart disease and peripheral vascular disease and aneurism(2) needing surgery?
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Re: Help please
« Reply #23 on: Dec 31st, 2007, 6:42pm » |
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on Dec 31st, 2007, 5:39pm, Annette wrote:
I wonder if half the people on this message board is 70 years old with heart disease and peripheral vascular disease and aneurism(2) needing surgery?
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First of all, whether you think so or not, Pops should be talking to his doctors about getting a script for 02. If THEY say no, then its no. All we can do is suggest things they can discuss with the doctors.
Second of all, are the above problems cause for not using 02? You didn't mention anything other than the emphysema being a cause of concern with 02. If heart disease is a problem, you should be warning a lot of people to not use 02, because yes, a lot of people on this list have heart disease. Should Richard stop using his 02? Should I? Should Chuck?
Although this person had some heart problems back in '89 and is on meds for high cholesterol, he may have a stronger heart than 3/4 of the people here. Once people (in the states anyway) have any heart trouble, they will most likely be put on cholesterol meds the rest of their lives, no matter how bad, or mild their conditions. You seem to have diagnosed major heart disease without having any clue how his heart is.
A lot of people on this list, being long time heavy smokers, have peripheral vascular disease. Are we to stop using 02 when we turn 70?
I understand that things are a bit different with all these problems at one time, but yes, there are plenty of people here with many of those same problems, other than being 70. The only thing that is normally held back from these people are the triptans and/or ergots.
Also,,,,,,,his doctors are watching the aneurysm (2?) and may not require surgery. Why are you seemingly scheduling him for surgery?
Also, many people are walking around with an aneurysm or two and don't know it. Especially among all these smokers here. If having an aneurysm IS a cause for not using 02, then I would think there should be a warning about that on the 02 handbook you co-authored and we should all be scanned to make sure we don't have a hidden aneurysm before our docs script us the 02. Are there such warnings?
If I was 70 and in this guys shoes, I'd be more worried about untreated cluster pain adversely compounding my various medical problems, than 02, but then that's just me.
Bobw
P.S. Happy New Year
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Annette
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Re: Help please
« Reply #24 on: Dec 31st, 2007, 8:31pm » |
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Thanks Bob for the chance to discuss this further.
The reason I am rather concerned about this gentleman here is the fact that he has many medical conditions/complications, some of them have not been fully investigated, who has not been able to contact his doctors but is willing to try things suggested here without medical approval.
There are a lot of medical conditions/complications going on on top of CH here. If I hadnt asked the questions we probably wouldnt know of the emphysema nor the aneurysm or any other problems.
1- Emphysema: to be fully assessed as emphysema one needs to have all the proper tests : lung function test, CRX and blood tests. Although the CXR was normal and the lung function test showed mild emphysema with moderate oxygen diffusion, one can not be sure of his whole lung function without knowing all the values such as FEV1, FEV and VC. He also should have specific blood test for eg arterial oxygen level. It appeared he hasnt had the full work up for lung capacity assessment yet.
He is 70 years old and we have no idea how frail or strong he is. He could be fitter than you and I or he could be bed ridden. The ability to take high flow oxygen the way Nani described depends on how well he can inhale and exhale. If his lung expansion is not good or if he is cumbersome it can affect his ability to fully exhale and he can potentially develop O2 retention which will adversely affect his respiratory drive.
If he is to use oxygen he will need to have a full respiratory assessment first and will need to be shown how to use it properly and ideally should be supervised while using it in case he develops complications.
2- Iliac aneurysm: Isolated iliac aneurysm is rare, it is only 2% of all aneurysms. Mostly it is associated with aneurysms elsewhere in the body. The most common cause for aneurysm is atherosclerosis, which is from plague formation from high cholesterol. That is why he is on cholesterol med. For someone who has bad enough atherosclerosis to form aneurysm its likely that they would have widespread vascular disease ranging from cardiac to brain to kidneys to eyes .... He hasnt had it checked in case he has a cerebral aneurism. Who knows, his worsening peripheral vascular disease may be the cause of his worsening CH?
This gentleman had angioplasty in the past which meant he does have cardiac problem. Being symptom free doesnt mean there isnt anything bad progressing or developing. Many heart attacks are silent. He has had a stress test last year but the result said nothing, I am not sure what was meant by that. However, unless he has an angiogram there is no ruling out that he doesnt have vessel disease in his heart.
The iliac aneurysm is 2cms. Vascular surgeon operates on all iliac aneurysm 3cm and above. Thats why they are watching it at this stage but they will have to fix it. All aneurysms need to be repaired eventually as they all progress, albeit at different rate. 50% of all aneurysms rupture and if surgery is done after rupturing the mortality rate is about 70%. The vascular surgeon hasnt rushed to operate here because they are still investigating. As isolated iliac aneurysm is rare they are looking for others elsewhere in the body ( thats why they are scanning the knees ). Furthermore prior to aneurysm surgery he will need to have a full cardiac work out to assess the risk of surgery to him. No vascular surgeon will touch him before they know he is a good candidate for surgery and it would involve an angiogram which he hasnt had.
People with peripheral vascular disease are always advised to avoid vasoconstrictors and that can be from smoking to ergots to caffeine. Oxygen is a powerful vasoconstrictor and therefore it should be used with caution in someone with this disease also. Its not recommended that all CH people be scanned for them prior to using O2 is because of the cost involved. However, people who are at risk should be, or rather their doctors should advise them of the risk.
I am not talking about absolute here. There is no absolute. Its not just age or heart disease or aneurysm or high blood pressure or bowel blockage or peripheral vascular disease or emphysema ... that is an absolute contraindication to the use of oxygen or any particular med, but it should be taken into account and to be weighed carefully for each patient. When you have someone who has ALL of the above at the same time, we have to be doubly careful. I didnt say he shouldnt consider using oxygen for CH, I only said that when I thought he had emphysema and moderate lung diffusion as in fluid in the lungs. When his daughter clarified that the diffusion she meant was the degree of o2/c02 diffusion I said for him to double check with his doctors first.
I am not sure how many people here are 70 and older but I am aware that many with heart disease or peripheral vascular disease etc do use oxygen but that is with their doctors approval. Each case has to be considered individually.
Lastly we are not talking about oxygen being the only option for him here. There are other medications which can work very well without risk to his existing conditions which he hadnt tried. What if he tries melatonin and finds that it stops most or all of the night hits? What if he adds lithium to verapamil and it stops most of the hits also? Why only oxygen in someone who has emphysema and vascular disease?
I dont know about you but I believe Chuck is using only oxygen because he cant use ergot/triptans and other meds such as neurontin/lithium/topamax didnt work for him. He also doesnt have emphysema nor peripheral vascular disease or aneurism, that I am aware of.
Is there anyone here who is 70 years old, has ALL of the above conditions and would push for oxygen as the first and only treatment for CH without trying other preventives first?
It is true that we are only offering options for people to consider and to discuss with their own doctors but I have seen here and in other cases when people are desperate and not able to see their doctors straight away they do go and try things without medical approval.
I would rather err on the side of being too cautious than taking risks, but then that is just me.
Thanks and Happy New Year to you too.
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Mediocrity knows nothing higher than itself; but talent instantly recognizes genius.
Arthur Conan Doyle
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