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Topic: From migraines to clusters (M) (Read 592 times) |
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WifeofCHSuffer
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From migraines to clusters (M)
« on: Jan 25th, 2005, 10:10am » |
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Hi my husband found out last March that his is a CH suffer. Never before had he had pain like this and it took weeks for the docs to figure out what was wrong with him and get him into a Neuro and get him on meds to break the cycle. Since then he suffers from migraines throughout the year. Relpax is the wonder drug for him. Right now I think he is getting ready to go back into another CH cycle. I cringe everytime I think about it. We have a 4 1/2 year old son, who just got so upset last year when Daddy was crying banging his head on the floor and no one could do anything for him. I am also pregnant with our second child due in May so I am under extreme pressure and stress to make things as easy as possible for us all.
Does anyone else suffer all year long with either Migraines or CH or is my husband one of the 'special people" to deal with this life of hell?!
Cathy
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floridian
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Re: From migraines to clusters (M)
« Reply #1 on: Jan 25th, 2005, 10:16am » |
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You and your husband are not the only ones to deal with this problem - there are others here that have both migraines and clusters - I have frequent migraine aura and occasional headaches that may be migraines, in addition to a regular summer schedule of clusters.
Read as much as you can. Work with a good doctor. There are many treatments that benefit both migraines and clusters. It may take some time and trial and error, but you can do things to manage these conditions and lessen the pain.
Is your husband on preventives year round now?
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| « Last Edit: Jan 25th, 2005, 10:18am by floridian » |
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WifeofCHSuffer
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Re: From migraines to clusters (M)
« Reply #2 on: Jan 25th, 2005, 10:17am » |
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No he only took veramphil and Topomax while he was in a cluster cycle and once the cycle ended the Neuro told him to stop and at the first sign of them coming back he was to start back on the meds. So far this year the Veraphil has not helped him not one little bit! Topomax is started to build up but nothing that is a good sign yet. 
What do you take to stop the attacks, preventative, abortive measures?
Glad to hear he is not the only one. I sure wish there was a quick fix for all of you that suffer these awful headaches!
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| « Last Edit: Jan 25th, 2005, 10:19am by WifeofCHSuffer » |
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floridian
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Re: From migraines to clusters (M)
« Reply #3 on: Jan 25th, 2005, 10:25am » |
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Some of the most common preventives include verapamil, lithium and topomax. Also, www.clusterbusters.com can be very effective, although it may not be approved where you live.
I use melatonin for my episodic cluster headache. Also, magnesium supplements (maybe helpful, usually not a quick fix unless intravenous). I also take B-vitamins, curcumin and drink green tea .... maybe makes sense for me, but if someone is really bad off, this might not be the first route to go. Also, one regular here claims to be able to stop a cycle with a 'detox' diet that is mostly vegetables - usually takes him a week or so, then he returns to a more normal way of eating.
There has been a mounting pile of evidence that over-coagulation plays a role in migraines and maybe clusters - people who go on anticoagulants seem to improve, although this has not been rigorously proven.
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| « Last Edit: Jan 25th, 2005, 10:26am by floridian » |
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WifeofCHSuffer
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Re: From migraines to clusters (M)
« Reply #4 on: Jan 25th, 2005, 11:05am » |
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I have heard so many people talk about the detox diet and eating spicy foods but unfortunately my husband has another problem that prevents him from eating spicy foods so that is out of the question.
As far as a detox diet, well like most people the only veggie he eats is corn, full of sugar! He really does watch the amount of sugar he eats daily. We thought that was his trigger last year and whether or not that did the trick we do not know yet. Since the cluster has not started we are just watching his diet. I wish he would do the detox thing but I guess maybe in a while I can talk tohim about it again.
Cathy
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floridian
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Re: From migraines to clusters (M)
« Reply #5 on: Jan 25th, 2005, 11:38am » |
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Lots of options - consider them all, and figure out which ones are best to try. With clusters, nothing works for everyone, just need to find what works for him.
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Biker
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Re: From migraines to clusters (M)
« Reply #6 on: Jan 25th, 2005, 3:57pm » |
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I dont wish to be rude and interupt a string, but have ya tried Oxygen? Perhaps a redundant thing to type, but oxygen helps me out alot. If nothing else, it gives me something else to think about till the headache goes away.
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lionsound
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Re: From migraines to clusters (M)
« Reply #7 on: Jan 25th, 2005, 4:09pm » |
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Hi Cathy,
I'm one of those "special people" that gets CH and migraines....
Always seem to have one or the other or BOTH. Unfun. And I'm home with my kids and they see me in pain all the time, since they were little, not much I can do about that....it's just part of what goes on around here. At times it makes me very sad.
I've learned that there are lots of meds and non-med things to try to help and one of the first I would go with is Oxygen.It helps me with clusters, and I've also found it helpful with migraines sometimes too. See the link over on the
<-----------left.
A lot of abortives can work for both. With clusters the mechanism needs to be faster....like a shot instead of a pill.
I hope that this is helpful in some way.
Be well,
Lionsound
PS. feel free to send me a PM if you want to talk more.
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| « Last Edit: Jan 25th, 2005, 4:11pm by lionsound » |
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thebbz
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Re: From migraines to clusters (M)
« Reply #8 on: Jan 25th, 2005, 4:52pm » |
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Hope the hubby gets feelin better. I noted no mention of abortive therapies for him. O2 was mentioned and imitrex. Better check these out with the Doc as they are effective with meeegraines and CH. I to have the double whammy, so meeegraines take the back seat I can suffer with them. When the CH hits I remove myself from views of others. Poor kids must have been scared 
all the best
BB
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WifeofCHSuffer
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Re: From migraines to clusters (M)
« Reply #9 on: Jan 25th, 2005, 8:14pm » |
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BB & Lionsound,
My husband has tried O2 but was given the wrong mask. He was given the nasal type, I now know from all of you that was wrong and when my husband goes back we will mention the correct mask.
Abortive measure for him is Relpax, he has not been prescribed a shot of imetrx but I know the Neuro said that if hte pain is during the day to come right to hte center and they would give him the shot. Another thing I will be talking to the Neuro about, why can't we have that at home as well. We don't even know if that will work for him but at this point anything is worth a try.
Loinsound - I did not see the link you were pointing too but I am new to the web site and am not very familar with everything yet. Sorry for being a rookie. Can you PM it to me?
Thanks guys I hope something works soon for all of you who suffer. This has been a rough10 months for us and it is only going to get worse I think. Tomorrow it goes from 32 to a low of 7. Headache here we come!
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Tara Ann
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Re: From migraines to clusters (M)
« Reply #10 on: Jan 27th, 2005, 4:19am » |
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I'm "special" too 
Also Lithium and Verapamil are my current meds. They are working very well for me this time round (was on them in the past and they did jack)
His doctor doesn't sound so great??? Is he/she worth keeping? Do you have other options for docs in your area? I do NOT see the sense of him making your hubby come into the office for a shot of trex! An attack should (if it can) be aborted right away.
So sorry he has it so rough. You sound like a wonderful supporter/wife! I know it must be so rough to see the one you love in pain.
Hugs and vibes to you and your hubby!
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Lucia
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Re: From migraines to clusters (M)
« Reply #11 on: Jan 27th, 2005, 6:55am » |
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I've had clusters for about 27 years and I am 57 now. I also get migraines year round. I am currently taking Depakote to prevent migraines and Imitrex for the HAs themselves.
I have found (coincidentally or not) that my cluster episodes are coming farther apart; this time almost 2 1/2 years. Last night I woke up in denial having almost forgotten what they are like and not having a clue where the Imitrex was. I do the breaking up of the vial and make the vials last. And does it work. I used to use Oxygen but would get the pain back and this way I don't.
Anyway, I found this website practically at it's inception and it is sure spiffed up since my last visit!
Oh, my migraines are down to one every other month.
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WifeofCHSuffer
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Re: From migraines to clusters (M)
« Reply #12 on: Jan 27th, 2005, 9:17am » |
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I don't know whether I am being particularly hard on this doc or not. I think that if a patient calls in pain and the Topomax is doing nothing for him that at least someone could call the same day and talk to him about what is going on. Instead he got a call the next day by a nurse who did not know going from 50 to 100 meant more pills. My husband had to spell it out to her.  Then there was no real discussion on when it gets bad enough we can get this or that called in or waiting here at the office for you. My husband is a non combative type who just figures he will ask questions when things are really bad and bothering him me I am a planner.
We don't have a lot of choices with Neuros in the area and the place he goes is suppose to be one of the top places, very busy and very big. I am glad that it has a great reputation and all I am just not happy with the service he receives. I realize others are much worse than my husband but we are still in the newbie stage of these CH and migraines and we don't know what to do. At least we could have someone holding our hands and telling us what we need to have and so on. I guess that is where you all come in. Thanks so much for the tips.
As far as abortive measures that is the Relpax, that is it. He tried O2 but had the nasal thing not the face one, that will be discussed at the appt on 2/16. Along with the shots.
An interesting thing we saw last night, when my husband was busy moving things around the house he noticed his head starting to hurt and when he stopped the physical activity it stopped hurting. He is only on Topomax 100 mg right now, nothing else. Should he be on Veramphil as well? He said it did nothing to keep the headaches away and the Neuro made the decision to take him off of it, should he call and tell him this and see if he should go back on the V? Or is this normal with CH/Migraine suffers?
I can't express my gratitude to everyone here with your helpful hints/suggestions and just words of encouragement. It is nice to know I have a place to turn to, to ask questions, feel like we are going down the right path, get advice on what course of treatment to have ans so on. You guys rock and like I said before some how we will all get through this and hopefully some day sooner than later a cure will be found and we can all stop living in pain and watching our loved ones suffer.
Thanks,
Cathy
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sandie99
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Re: From migraines to clusters (M)
« Reply #13 on: Jan 27th, 2005, 10:31am » |
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Hi Cathy,
I'm a chronic CH sufferer. In my case, continius CH cycle has been going on since fall 2001.
I suffer from migraines and other headaches, too, but "luckily" for me, since CH started it had dominated my head.
I am glad that the doctors were able to find the correct diagnosis for your husband's headaches... I know how horroible it is to live with a devil inside your head and to have no idea what it is. Finding the right medication can be equally difficoult; I'm on preventative no 6 or 7 (lost count) at the moment. I'm so happy that you've found something that works for him.
I wish you all a lot of strength. Living with CH is the family can be demanding... You should also check out what the other supporters have to say. I'm sure that they can give you lots of practical advice.
I wish you all the best. And warm welcome to CH family. We're all here for you... 
Sandie
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WifeofCHSuffer
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Re: From migraines to clusters (M)
« Reply #14 on: Jan 27th, 2005, 12:37pm » |
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Sandie,
Well we are hoping that this is the correct dosage of Topomax, only time will tell. I sure wish he could be on this med for a long time, but it makes him very depressed. So he goes on and off of it to ease that state.
Cathy
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Tara Ann
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Re: From migraines to clusters (M)
« Reply #15 on: Jan 27th, 2005, 12:38pm » |
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How long has he been on his preventative? Most prevents (I've never tried topamax though) take a few weeks to reach the full affect. Some CH'ers find a 10 day taper (or so) helpful in giving relief until the preventative kicks in.
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WifeofCHSuffer
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Re: From migraines to clusters (M)
« Reply #16 on: Jan 27th, 2005, 1:13pm » |
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He has been on Topomax for about two weeks now and has a steady increase of the meds until two days ago when they bumped him to 100mg and leaving him there until he sees the Neuro on 2/16. He stopped his Verph. because it was doing nothing for him.
So we are hoping this will help and is helping!
Cathy
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Margi
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Re: From migraines to clusters (M)
« Reply #17 on: Jan 27th, 2005, 1:23pm » |
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but how long did he stay on the verapamil though, Cathy? It does take a couple of weeks to get fully into his system and lots of folks don't see relief until about 480mgs. Verapamil is much more easily tolerated than topomax.
I'm having a hard time following your posts, sorry. You said down on the supporters boards that he had a cycle last spring that finally left, yet you say here he's been in pain for 10 months. I'm confused.
If I were you, I'd be on the phone to that doc to get on a cancellation list at the very least. I sure wouldn't wait until the middle of february to be seen. And, from the sounds of it, this doctor isn't at all cluster knowledgeable. Not if he prescribed canules for oxygen and would only let him use 'trex shots under supervision. I'd ask for a referral to a cluster knowledgeable nuero right away. There is a list of them over at the OUCH website, under the Recommended Doctors button. There's probably one in your area.
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WifeofCHSuffer
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Re: From migraines to clusters (M)
« Reply #18 on: Jan 27th, 2005, 2:37pm » |
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He was only on the verapamil for the cycle last year. He never went to the high dosage that you are on, I can't remember how high it was but it was not that high. Not sure how long that was but he was told to start taking the verapamil when his cycle was back. He called and they told him to start taking it yet it did nothing for his headaches. He stopped taken in only after 2 weeks, I agree he should have taken it longer but he is not that patient.
He has been in pain for 10 months between the CH and the migraines he has been suffering for 10 months with this. Pain to me is any headache at all for him. He sweats thinking that this could be the start of a CH cycle. I sweat too because we are so afraid of the pain he will suffer.
I am not sure why the shot was never prescribed could be that he responds well to the relpax, although it takes 30 minutes for it to start working it does work. I think the doc figures if it is working while jinx the situation. But i don't know it will be something I bring up with him.
I will check the web site and see if this doc is on there and if not I will call around to the others and see how accepts our insurance.
Hope that clears some things up for you.
Cathy
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| « Last Edit: Jan 27th, 2005, 2:56pm by WifeofCHSuffer » |
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Margi
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Re: From migraines to clusters (M)
« Reply #19 on: Jan 27th, 2005, 2:39pm » |
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oh, I'm not on verap - it's my hubby who has been on it in the past. He went as high as 720 a day and combined it with lithium.
Sure might be worth another try for him with the verapamil.
Thanks for the clarification, Cathy.
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WifeofCHSuffer
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Re: From migraines to clusters (M)
« Reply #20 on: Jan 27th, 2005, 2:57pm » |
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It will be something we talk about with the Neuro. Funny the institute that he goes to is one of the best in the area and it is covered by our insurance. Otherwise we would have to drive to Ann Arbor all the time and pay 100% and hope to get reimbursed through BCBS. UGH!
I am going to give this doc another chance and see what happens.
Here is to whatever cocktail works to keep our men PF!!!! 
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BarbaraD
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Re: From migraines to clusters (M)
« Reply #21 on: Jan 28th, 2005, 7:36am » |
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I'm another "lucky" one. I have both migraines and CH and neither is fun.
Topamax was my lifesaver for years. My neuro let me regulate the dose (at certain times of the year my CH gets worse than others). I've been up to 400mg a day (don't recommend that dosage to anyone - I got suicidal until someone from this board noticed and told me to get it back down). Until my HA subsided, I was up to 300mg. My prevent dose was 100mg AFTER the the headaches subsided. It put me in remission for a few years. But in 2000 a fall (hit my CH side of head) started them up again.
O2 at at least 8 liters per minute is the minimum dose of that with a non rebreathable mask. Make sure he's on a high liter dose of O2. Check your regulator and make sure it goes up high enough.
If you need the neuro BEFORE his appointment - go to his office about the time your hubby is going to get hit and let him get hit in the neuro's office. That usually gets attention (and an education for the doc as well as the whole office). There's no way to describe the pain, so let 'em see it firsthand. All I have to do these days is call my doc's office and say "Headache" and I get to him immediately. They don't want me coming back in there and showing them again. Seeing someone in the middle of a CH is something that is "remembered!" Not a pretty site. And for goodness sake - DO NOT BE ASHAMED of having CH! It's a horrible disease and we should NEVER apologize for having them.
Question his neuro - "How many Cluster Headache sufferers have you treated?" Interview the doc - they're practicing and are NOT gods. YOU are paying for his service - get what you're paying for. Take information from this website with you to SHOW and TELL. If he is giving trex pills and no shots - he probably isn't very educated in CH. But you need help - this is not the time to be complacent - Speak up and get some help.
PM me if you need more on how to get some results. I've been to a "bunch" of HA "EXPERTS" and most of them were kooks and didn't know beans about CH. I have NO qualms about telling them to go to hell. Finally (about 10 years ago) found a neuro who's wonderful and KNOWS about CH (he has migraines and says he's glad that's ALL he has). My primary doc works with him very closely, so I'm lucky to have them.
My heart goes out to you because I went for years (and thru numerous doctors) till I found this website and got some horsesense advice from other sufferers. Stay around here and "listen" to what everyone is telling you.
Hugs BD
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Margi
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Re: From migraines to clusters (M)
« Reply #22 on: Jan 28th, 2005, 10:00am » |
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excellent advice from Barb here, Cathy. Read it and then read it again.
Mike got hit at the doctor's appt the other night. Wow, that doc couldn't prescribe meds for us fast enough. Scared the crap outta him but we left with what we needed. He'd never actually seen a cluster before - most of them haven't. It's effective in convincing them that this isn't just another "headache".
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