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Topic: What can I do? (Read 2268 times) |
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lovehim
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I love this man, if you can't tell.
I am an Emergency Room Nurse, with a Bachelors degree, and I have never seen anything like this. It is honestly like watching someone have a stroke. Someone I love, and currently it's happening 4 times a day. He cries and can't move, he makes no sense, our dog whines through the entire thing.
This current cycle has been going on for 2 weeks, before that it was 1 CH a day @ 5pm, I thought that was bad, what I would give to get that back. He is restless, though at times will lie his tortured head in my hands, as if to give up. And I can't help, do you have any idea how hard this is not only as a supporter but as a nurse? I would give my life for these to stop. AS bad as it is to watch, helplessly, I can't imagine what it must feel like.
He will be starting his last ditch med, Lithobid, this week. We both have problems with this drug, some for personal reasons.
Has anyone had a surgery?
Anyone seen Dr. Vincent Martin in Cincy?
Anyone have something positive to say about chronic CH with epsodic cycles?
Thanks and good luck!
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| « Last Edit: Dec 13th, 2006, 1:40pm by lovehim » |
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LeLimey
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Re: What can I do?
« Reply #1 on: Dec 13th, 2006, 4:21am » |
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First off we can help but I need to ask a couple of questions!
What meds is he on or has he tried (including doses)? Prevents and Abortives?
Has he tried O2? Red bull or strong coffee?
What do you mean by chronic with cycles? I think I know but I won't assume so can you elaborate for me?
We'll help you BOTH I promise!
Helen
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Woobie
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Re: What can I do?
« Reply #2 on: Dec 13th, 2006, 4:30am » |
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Know what you mean!
Helen is wise - listen to her. I am no good in this department - but I know first hand what you're feeling.
Stick around - you'll get what you both need here.
And = welcome
woobs 
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lovehim
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He is currently taking Verapamil ER 240mg bid, Topamax 200 mg, Stadol NS for acute, Lidocaine 2% intranasal for acute, I just picked up the oxygen tanks yesterday.
He has been on Verapamil from the beginning (approx. 1 yr) has tried Prednisone, Neurontin, Methergine, for preventative and Imitrex and Zomig for acute which did nothing.
The doctor says he has chronic clusters (the one at 5pm everyday for over a year) and currently is suffering through an episodic cluster cycle that is causing the additional 3 CH's a day. He says this could last 1 to 2 months. Then go back to just chronic with the "normal" evening CH.
So far Stadol is the only med that has helped with the acute pain, it makes him feel bad too, but no where near as bad as the CH. The doctor of course doesn't like prescribing this because it's a narcotic. I've had to argue with him the past few times. How can he deprive him of the only thing that gives only minimal relief?
He has always drank a lot of coffee.
There is a strong history of bi-polar disorder in his family which makes us anxious about the Lithobid. The doctor even said he thinks he may have a latent bipolar disorder. Why mess with brain chemicals in someone who is other wise lovely and happy, besides these damn CH's?
I sincerely hope you can help, thank you for trying and caring.
L
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LeLimey
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Re: What can I do?
« Reply #4 on: Dec 13th, 2006, 2:15pm » |
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Have you considered Zyprexa? A lot of people have had success with that. There is an article in the current OUCH US newsletter about it and you might like to have a look at some threads here on the meds board too.
Here's a link to the newsletter
http://www.ouch-us.org/newsletters/newsletters.shtml
The dose of verap is too low to be effective, generally it takes about 480mg to start working although its very "personal" with some people being on up to 960mg per day.
What dose of pred? Under 80mg is generally not effective.
(I'm answering all these really quickly but we can go into more depth anytime you like - I just want you to have a reply asap!)
How is he getting on with the topomax? It doesn't sound like its helping much to be honest and I worry about the amount of meds he is taking there. A bit of simplification might ork wonders.
I'd look at dropping the topomax (gradually, you need to taper off it) upping the verap, maybe with a 80-100mg course of pred while tapering up. Under doctors supervision and advice of course. I don't know the first thing about your partners other medical conditions if any and your doctors advice on that is always paramount. Having said that, taking power and doing your own research makes you your own best advocate!
Does he find either Ice or Heat help? Red bull or cheaper equivalent drinks work brilliantly for me if taken at the first twinge of a hit. They are high caffeine and also contain taurine which intensifies the effect of the caffeine.
I also have cycles within being chronic by the way. Every 5-6 weeks I get a week to ten days of worse hits which are harder to abort. I'm not the only other one who suffer's this phenomenom here either so he isn't alone with it.
We'll leep working on this together, we'll find you your silver bullet I promise!
In the meantime, I want to know how you are doing too. Being a supporter is the hardest thing on this earth and we appreciate all you are doing for your partner, we want to make sure you're okay too so please don't ever be afraid to vent, admit you're afraid or you've had enough. we all go through the same I promise. I'm a supporter as well as a sufferer and I know I'd sooner be the one getting hit than the one watching. Supporters are worth their weight in rubies in my eyes and the eyes of everyone else here and you're very, very welcome to be here and always will be!
Helen
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E-Double
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Re: What can I do?
« Reply #5 on: Dec 13th, 2006, 4:15pm » |
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you are doing it!
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Jonny
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Re: What can I do?
« Reply #6 on: Dec 13th, 2006, 4:31pm » |
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on Dec 13th, 2006, 1:58pm, lovehim wrote:The doctor even said he thinks he may have a latent bipolar disorder. Why mess with brain chemicals in someone who is other wise lovely and happy, besides these damn CH's?
I sincerely hope you can help, thank you for trying and caring.
L |
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Why?......Because if he is lucky like me 85% of his HA's will never even show up.
I was chronic for 30 years and went from 4-6 hits a day to 2-3 every ten days.
Verapamil and Lithium is known as the chronics cocktail, it dont work for some but it works for a shit load of chronics.
After 14 years untreated that combo gave me my life back. I got married, started a kickass biz and smile every day  .....I took it everyday for 14 years and then the HA's just went away....dont ask me why, but they did.
Talk to his doc about upping the verapamil.......and he should be on at least 600 mgs a day.....like I said, talk to the doc!!!!!
Good luck and welcome to the family!
Just remember....Im King of this joint 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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lovehim
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I cannot tell you all, how much it means to me that you are answering my questions. Thank you beyond words.
His doctor is apparently "the headache guy" in Cincy, according to other physicians, even those at the Cleveland Clinic. He is incredibly busy and at times distracted. For instance, to get the O2 through insurance, the med supply place called his office, they gave them a list of meds that he is not on. I constantly have to remind the MD what he is taking. He's not very receptive to suggestions/questions about meds, especially the polypharmacy thing that I have a huge problem with. As I said, I am a nurse, I have medical knowledge and when someone is afflicted with something like CH they do all they can to understand it and how to try to fix it. I agree that increasing the Verapamil is a good deal, we're willing to try Lithobid. I just think maybe the Topamax should be tapered and stopped, instead of using 2 durgs that work on the CNS. I have brought these concerns up to MD and he basically ignores it. I go to every appointment I can and speak with MD on the phone. Does anyone know of other CH doctors in Cincy?
Thanks for the hope.
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Maffumatt
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Find a general practitioner with a brain that practices medicine, not a specialist who thinks he knows it all. Find one that will work with you, not against you. This way he will be more open to suggestions. Mine has been willing to try anything I suggested that I have learned from this site, he listens, and for that he has my respect. Good luck.
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| « Last Edit: Dec 13th, 2006, 6:28pm by CaSS » |
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Jonny
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Re: What can I do?
« Reply #9 on: Dec 13th, 2006, 8:27pm » |
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http://www.ouch-us.org/chgeneral/doctors.htm
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Woobie
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Re: What can I do?
« Reply #10 on: Dec 13th, 2006, 8:59pm » |
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HI........
Ramon's family doctor treats his clusters. We cant find a neuro around here who will LISTEN. His family doctor knows more about clusters than any neuro we've found here, and he is willing to try anything.......and he listens to Ramon and he reads the stuff that Ramon brings to him... Who says you HAVE to be treated by a neuro?
I hope you find a good doctor ...
and HUGZ to you!
woobs
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lovehim
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I spoke to his HA doctor today. I told him we would be more comfortable with the Lithium if he were off the Topamax. He said that was fine and gave instructions for tapering. I also asked to up the Verapamil. He said there were only limited studies that support increasing it out of the theraputic range. He was actually easy and pleasant to deal with today. We have an appointment to see him next Thurs. to discuss the plan in more depth and make a plan for when the doctor is out of town over the holidays. He seems to think that he is the only one in the city that can handle us
Thank you for giving me the courage, confidence and information to deal.
L
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Jonny
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Re: What can I do?
« Reply #12 on: Dec 14th, 2006, 7:03pm » |
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This is how my post should have read......I type with two fingers, so forgive me.
on Dec 13th, 2006, 4:31pm, Jonny wrote:| Talk to his doc about upping the verapamil.......and he should be on at least 600 mgs a day of Lithium.....like I said, talk to the doc!!!!! |
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Linda_Howell
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Re: What can I do?
« Reply #13 on: Dec 14th, 2006, 7:35pm » |
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You said you picked up 02 for him? Please tell me it came with a non-rebreather mask and the regulator goes to 15 lpm.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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lovehim
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Sorry, it's been a crazy week. Yes, I forced them to give me a non-rebreather mask. What's the point of being on 12 lpm if you are using a cannula like the MD prescribed? It only goes to 12lpm with limited relief.
I spoke to another HA specialist who said that he had one chronic patient (4 yrs chronic) undergo Jannetta's Procedure (microvascular decompression) and had complete relief, has not had a CH since. It's very invasive (craniotomy required) but we are considering it. We both would prefer it to lifelong Lithium. He needs an MRI and he's going to see how he does with out any meds for a bit. The CH's seem to get worse when he started taking Neurontin and have stayed that way since.
Tried RedBull too, it makes him super speedy with minimal relief. Minimal is better than none.
Thanks again everyone!!
L
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lovehim
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OK, more questions...He keeps complaining of the entire right side of his body aching, not the left side (headache is on the right always). Common, with the quantity, intensity? Could it be the Topamax? He's on 50mg tonight then down to 25mg for 3 days and it's over with that poison. He is also now telling me he was really depressed when on 200mg of Topamax. Watch your loved ones please!!! Also, anyone had surgery? He is NOT going to take the Lithium. It is way too scary for such a small chance it will work. After the MRI, if shows any trigeminal compression, I think surgery is a safer, more effective way to go. Possibly CH free!!! Once again, I feel like I'm losing strength, how can I help?
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E-Double
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Re: What can I do?
« Reply #16 on: Dec 27th, 2006, 4:24pm » |
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There is a higher chance of it working than surgery!!!
As far as all of the research goes...hit PUBMED!!!
Read !!!!!!!!!!!!!!!!!!
on Dec 12th, 2006, 7:15pm, E-Double wrote:Here's my rookie schpiel
This is a great resource to know like the back of your hand...print it out and give it to the doc
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
If you want an abortive with the least amount of side-effects O2 should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=medsarchive2 005;action=display;num=1120904753
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05 now just awaken from a 6 month old haha).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall. (Maybe I should start following my own advice again but then I might not wake up for the baby and wife will give me a real headache )
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes, good luck & stay as positive as you can!!!!
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I can't believe that I have to bang my
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But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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lovehim
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I will look at all that stuff, but are you talking about Lithium?
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lovehim
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Ok, look, surgery is very scary, we obviously wouldn't do it without research and proof (MRI) that something is compressing the trigeminal nerve. However, his CH have gotten worse since taking all these drugs that work on the CNS. With his history, Lithium is not an option, his decision. As the article says, everybody's different what works for one won't work for all. I read a lot and have read articles that state 40% efficacy of Lithium. Being a nurse I have access to medical journal through OSU and have read about all the meds and the surgeries. I just want to know if anyone has had these wild side effects on Topamax or had surgery. I do not need my intelligence insulted.
Thanks
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E-Double
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Re: What can I do?
« Reply #19 on: Dec 27th, 2006, 6:45pm » |
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I am not on any meds since March 06.
I'm chronic and deal med free.
I would not have surgery.
My choice as is not using anything anymore other than O2.
Good luck and I am in Mental Health and have full working knowledge of ALL meds we use,
best,
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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lovehim
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To E-Double - Congrats on being med free, we are heading that direction regardless of the MRI or surgery. The meds seem to have made everything worse. He tried the o2 and it was very minimally effective. It is important to remember everyone is different and will respond to meds (or surgery) differently.
I felt attacked by your earlier reply. This is a tough time and I am emotional. Just please try to make others feel welcome and supported here. Apparently we all need therapy of some sort.
To ALL - If anyone else has answers to my questions about Topamax or surgery, please answer. Or, I guess feel free to write whatever you would like.
thanks
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| « Last Edit: Dec 27th, 2006, 11:45pm by lovehim » |
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E-Double
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Re: What can I do?
« Reply #21 on: Dec 28th, 2006, 10:23am » |
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I'm sorry that you felt attacked.
If you have read any other of my posts or replies through the years then you would know that is not in my nature.
I do apologize sincerely!!!!
I do however forewarn against any surgery that does not show strong, highly evidence based, empirical data across hundreds of CH patients to have a > than 80% efficacy in relief.
Many have had surgeries of one type or another that have been studied and wind up with brief relief or permanent relief on the CH side yet have the clusters develop on the opposite side.
I would HATE for the both of you to have to go through any of that.
Look into "alternatives" prior to anything.
That is my extremely humble opinion and I am again sorry that you have felt attacked.
Hugs to you and keep fighting.
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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seasonalboomer
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Re: What can I do?
« Reply #22 on: Dec 28th, 2006, 11:03am » |
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I appreciate where you are even though I'm not a chronic sufferer. I can tell you that you begin to lose yourself into the hysteria of CH even as an episodic as I am after a few weeks of a bad cycle.
It's rare that CH is completely bulletproof from the various weapons that most find success with. I know you said you had minimal effectiveness with the O2 -- is this true even after the non-rebreather was used at 12 lpm? Are the little rubber flangy things truly sealing -- a cheap non-rebreather sometimes doesn't cover all the holes. Getting pure O2 has been the key for many. The other thing many, even those who have not had good success with O2, have used is the www.clustermasx.com and it has turned their opinion on O2. I'm a lucky one in that O2 will kill nearly 80% of hits within 10 minutes.
Also, I see you've mentioned the pain meds and prevents but have you used Imitrex injections? I may be missing something in the thread but these things have also a pretty good record of killing a hit pretty effectively. And while many don't like the idea that there seems to be some anectdotal info that they extend the cycle for episodics, if he's chronic and can get some relief, it would seem worth a go. I've yet to NOT have Imitrex injections work to kill a hit (for me in less than 5 minutes) when I've had to go to them in emergencies.
It's becomes a numbers game there sister. If he could find relief for 1/2 of what he suffers will it have been worthwhile.
You'll find only a few adherents of invasive surgery here on this site. Yes, some, but far more of us who have found answers without going that route and searching with hope for answers that can help us MANAGE CH and find answers. Plus the love and caring of those on this site.
Scott
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Margi
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Re: What can I do?
« Reply #23 on: Dec 28th, 2006, 2:24pm » |
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on Dec 27th, 2006, 5:07pm, lovehim wrote:Ok, look, I just want to know if anyone has had these wild side effects on Topamax or had surgery. I do not need my intelligence insulted.
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ok, look....I've been trying to stay out of this one but...no one here is insulting your intelligence. Yes, we know you are a nurse and, hey, congratulations on that. We have lots of professionals here - our common thread being that we all suffer in one form or another from cluster headache (whether it is in a supporter or sufferer role). Not ONE of us has all the answers but, together, we probably do have more experience and knowledge about cluster headaches than most medical professionals. The reason for that is that cluster is the ONLY thing we study and quite a lot of us have been doing that non-stop for many years. The advice you get here will be the best advice you get anywhere, so don't assume it's being offered to insult your intelligence, ok?
I've just read through this again and, at first, you and hubby were going to go for the lithium, now you're not. That confuses me. If your hubby does have bi-polarism in his family, why NOT try the lithium? I'm sure you know that is the drug of choice to treat bi-polarism? The cluster dose is much smaller though and there's no promising that it has to be a "life-long" thing. You also have the option of trying the lithium pulsing method that has helped a few people here, my husband included. The theory is to dose before the biggest hit of the day, just a small dose, either 150 or 75mg, two hours prior. You've said he gets a big hit at 5 p.m. - so take the 150 at 3 p.m. Then, if there is another breakthrough, redose 2 hours prior. It sounds like he is pretty predictable in his pattern and, in that case, the pulsing method can work very well. It may take a couple of days to regulate the pattern but my husband got the first 4 months of his last cycle pretty much pain free because of this method and he's lived to tell about it.
Yes, folks have similar horror stories to Topomax here, the most common being memory loss and general aches and pain. It's all in the archives. It's quite often referred to here as "Dopemax" for obvious reasons.
As to surgery, well, as I've said - take the advice you're being offered here as gospel. Eric (E-Double who is, by the way, one of the sweetest and kindest people on this site) brought up a very good point, that even if it does prevent further attack on one side there IS no guarantee that the other side won't become affected. Cluster headache happens because of an irregularity in the hypothalmus and unless your surgeon has found a way to fix that tissue overgrowth, surgery is only going to make things worse for your hubby. Why put him through that?
Just one final point - your first post you said: "do you have any idea how hard this is not only as a supporter but as a nurse?" Honey, it doesn't make a difference if you're a nurse, a neurologist or a nanny, ok? We all walk the same walk, and yes, we DO know how hard it is. That's why we stick around here and offer advice, trying to help each other cope by sharing our successes and our failures. Cluster headaches don't care about the level of your education and neither do we. We all leave our hats at the door here and the only prequalification for membership is to know the pain. So, pull up a chair, listen and learn. You'd be surprised at the accuracy and proven/disproven methods you'll find here, I promise.
Please take this post in the spirit it's sent - I wish nothing but pain freedom for you both, please know that.
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Mrs Deej
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Re: What can I do?
« Reply #24 on: Dec 28th, 2006, 9:56pm » |
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L,
I'm sorry you have had to find us but for one reason or another you have chosen to stay and read, now is the time to listen and take action. There are MANY people on this site that have had this beast for 30 years plus, PLEASE take their advice, all they want to do is help.
Please ask ask ask ask questions (as you are doing), PM if you feel more comfortable doing that. Know that the people here are trying to help, because they themselves have "been there, done that", or they have a loved one that does or did.
I wish you and your husband the best of luck.
We are here for you!
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