Anyone's OH a chronic pain sufferer?

[WantsALittle1]

DH has been a victim of excrutiating migraines for about the last two years. He has had MRIs, blood tests, hospital visits, and has seen three different neurologists. The toll that his suffering takes on us as a family and on me is immense. Nobody has been able to help him thus far, so he just takes meds when the migraine comes on.

This morning he woke up, pale as a ghost (from the nausea) and crying from the agony he was in. The meds his neurologist gave him did nothing for the migraine that started last night and so it carried through to this morning. We tried giving him an imitrex injection but the needle popped out and imitrex squirted everywhere. It was his last hope. He is now in the ER getting IV meds and I'm at home trying not to cry.

Watching my husband suffer is so hard on me. DD is also getting to an age where she is picking up on our emotions and this morning she started crying when I started crying. I don't want her to be scarred by these severe migraine episodes, but they happen so frequently, and both DH and I can get emotional when it happens. We try to keep her in the other room while doing the injections or when he is vomiting, but then she just cries until I pick her up because she knows something is wrong with Daddy.

Anyway, just wondering if anyone else can relate or might have some advice on how to cope. Probably just preggo emotions but this morning was really hard on me seeing my love pale and throwing up from pain, and knowing DD can sense something is wrong with Daddy.

 

[bluebell]

Sorry to hear this I suffer from chronic widespread pain but thankfully not migraines and can totally relate to how debilitating it is having a pain condition I also know how much it impacts on my DH, who is wonderfully supportive but sometimes gets very frustrated with the situation as our whole life changed overnight, not just mine

I don't know how it works in America but I've been on a Pain Management Course which was really helpful, talked a lot about pacing, impact of emotions, exercise etc... to bring your condition under better control. There's lots of info on the Pain Support website on coping techniques.

I think what's been key to us moving forwards positively is acceptance.

I hope you hear from some other partners / people who suffer from migraines who will have more helpful advice

xx

 

[Debi]

Are they cluster headaches? My oh gets these for about a month every year, with no real explanation why. He is in absolute agony with them. He says they are like a migraine x 100, but they aren't migraines. We are very lucky that he isn't chronic. It is terrible. He gets a pain killer called rizotryptin and has has started to use oxygen which does help. I really really feel for you guys. I know how bad it is for our family the month he suffers, never mind dealing with it for 2 years.

 

[calm]

It sounds awful, has he tried acupuncture? It never did anything for my chronic pain, but its supposed to be really successful with migraines, I hope he feels better soon

 

[Abigailly]

My Husband is an episodic cluster headache sufferer. He gets it for 3 months of every year. Although this year was 4 months so we may be on the slippery slope to chronic.

During an episode he uses up to 4 sumitriptan injections a day and is on oxygen. So my DD is used to seeing him like this now. However we've always been open with her. Even from a young age she's known Daddy can get a very poorly head but his medicine can make him better. Now at 3 she knows where his medicine is and she knows how to dial 999, just on the off chance he gets one when she's alone with him and it's worse than usual.
It's not something you can hide from them. Even if you think you're being brave about it they pick up on it. And I've never been able to find away around that.
I think hiding it can be more detrimental to them though.

In a way, I'm thankful he doesn't like been near us when he has one, but it's horrific watching him in this pain. I can't bare it. Knowing he's gone to lengths like snorting ice to try and help the pain.

Honestly, there have been times where I've been raging at him for 'ruining' yet another day out. But it's just something you have to deal with.

Sorry if this is rambled. We are currently 'mid episode' so emotions are running very high here.

 

[WantsALittle1]

Debi: They have been diagnosed as migraines and not cluster headaches mostly based on his pain level (very severe, but not as bad as clusters), sensitivity to light/sound, the presence of the nausea/vomiting along with the headaches, and the really quick recovery from them once he gets an Imitrex in his system.

calm: I just asked him and he said he will consider it if all these different medication regiments don't work. I am pretty sure a true acupuncture test would require him going off all his meds, and he is basically petrified at the thought of that

abigailly: I totally understand. We've been battling the migraines for 2 years now and I too have gotten mad at DH for having a migraine at a time when I really wanted and needed him to be fully present. This sounds just awful and makes me feel horribly guilty because I truly cannot understand what it's like to be him. It's so hard, though, when we barely see each other during the week and look forward to the weekend with anticipation, and Saturday he is conked out on meds all day or else in horrible pain and unable to even converse and then the same thing happens Sunday too. I feel like our happy time together is just wasted. Vacations, trips, work travel, date nights out, and even intimacy have been interrupted by migraines.

He gets them daily now, and has for the last 1-2 months, but we are very lucky that they respond quickly to sumatriptan.

May I ask--does your husband get relief from the sumatriptan or does it simply dull the pain a little? When he feels a headache coming on, how long until he is back to normal? I totally understand your feelings, and I understand what it's like to be mid-episode too. After our awful ER day Wednesday, hubby had another migraine this morning and almost threw up his cereal. I get so angry at doctors for not being able to help him. I get mad at DH for being stubborn about this pill vs. that pill, or pills together. Sometimes we even fight as he wants to just listen to what the neurologist says and I think the neurologist is an awful person who's done nothing but ignore him and make his migraines worse.

It's very difficult to deal with, and I only hope that our daughter and son do not get them from Daddy.

 

[Abigailly]

Debi: They have been diagnosed as migraines and not cluster headaches mostly based on his pain level (very severe, but not as bad as clusters), sensitivity to light/sound, the presence of the nausea/vomiting along with the headaches, and the really quick recovery from them once he gets an Imitrex in his system.

calm: I just asked him and he said he will consider it if all these different medication regiments don't work. I am pretty sure a true acupuncture test would require him going off all his meds, and he is basically petrified at the thought of that

abigailly: I totally understand. We've been battling the migraines for 2 years now and I too have gotten mad at DH for having a migraine at a time when I really wanted and needed him to be fully present. This sounds just awful and makes me feel horribly guilty because I truly cannot understand what it's like to be him. It's so hard, though, when we barely see each other during the week and look forward to the weekend with anticipation, and Saturday he is conked out on meds all day or else in horrible pain and unable to even converse and then the same thing happens Sunday too. I feel like our happy time together is just wasted. Vacations, trips, work travel, date nights out, and even intimacy have been interrupted by migraines.

He gets them daily now, and has for the last 1-2 months, but we are very lucky that they respond quickly to sumatriptan.

May I ask--does your husband get relief from the sumatriptan or does it simply dull the pain a little? When he feels a headache coming on, how long until he is back to normal? I totally understand your feelings, and I understand what it's like to be mid-episode too. After our awful ER day Wednesday, hubby had another migraine this morning and almost threw up his cereal. I get so angry at doctors for not being able to help him. I get mad at DH for being stubborn about this pill vs. that pill, or pills together. Sometimes we even fight as he wants to just listen to what the neurologist says and I think the neurologist is an awful person who's done nothing but ignore him and make his migraines worse.

It's very difficult to deal with, and I only hope that our daughter and son do not get them from Daddy.

To answer your practical questions first. His injections usually cut it out completely. Not to the point of being completely PF (Pain Free) but to the point of being able to function. Oxygen only works if he catches the headache in the very early stages. Red Bull (or anything with Taurine in it) helps to get rid of any big shadows he has. Sumitriptan really takes it out of him though. It makes him, tired, sluggish and a bit out of it. Especially the amount he's on.

If he catches a head ache with and injection it will only last a few minutes. However if he can't take any more injections then a head ache will last between 30 minutes and 120 minutes. With the 'aftershock' lasting another hour or so. But during an episode he gets roughly 5 a day.

I think doctors often write them off, they say 'it's just migranes' and don't push to get it sorted. We wouldn't have got oxygen if I hadn't stormed in with physical proof that it works.

Our relationship has come close to breaking point during episodes before, and then I remember, that actually he's been close to suicide before he met me and a few months of me putting up with it is nothing compared to what he feels.

We often have the 'why not try something new' argument against the neurologist. And DH will often take the neurologists word as Gospel, when I've actually done hours of research on something else. But DH is just so scared at the thought of trying something that involves him not using his injections that he can't. And I understand that, it just makes it frustrating for me!

Have you looked out for an online support group or anything? For CH there is a charity called OUCH that have been gems for us. They have filled in forms for us to get us new medication. They have supplied things that help him. And they're a constant support network for both of us. I'm sure something will be out there for migranes.

 

[calm]

I'm glad he would give it a try, I was a bit worried after posting, I didn't want to seem like I was trivialising it all by saying it could all be solved by acupuncture, as it seems he gets very seriously ill. I have no idea if he would be required to stop meds or not, it might be worth asking to see if any would do it without this requirement

 

[WantsALittle1]

Abigailly: wow, it sounds as though you guys have been through so much and I'm so sorry I think your emotions are totally understandable, all of them. I, too, have done a lot of research on DH's condition. I haven't found any major things we should try besides having his jaw checked for TMJ and maybe trying exercise/massage, and I have a hard time convincing him to try anything out of the ordinary because he fears not being able to get Imitrex when he needs it (just like your hubby). He takes an Imitrex to cure the crisis he's having, and apparently Imitrex can produce a serotonin surge that your body comes to rely on, effectively making you dependent on it

It is wonderful that you were able to be a champion for him by pushing for the oxygen treatment, and it's wonderful that that is working to a degree! I am trying to do the same for DH--when he is in the middle of an episode he really can't care for himself and that's when the lion in me comes out, gets on the phone, and calls the doc or pushes for a different kind of treatment. I am so tired of being told by his neurologist that her wacky treatment plans are going to work--they've just made him worse? How can she convince herself that her ideas are working?!

calm: I will definitely follow up on the suggestion. I personally fear DH being on pills for so long (he was on motrin from teenage years to 26, and he's been on imitrex since 26) and the effect it may have on his liver and kidneys. I WANT there to be a non-chemical solution to this issue

 

[sequeena]

Yes my oh has gastro problems and is on several medications. He's going for a mouth and rectal magic eye on Thursday so I really hope it helps.

I feel for you and oh it really takes over your lives.