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        Supporter's Corner >> Supporter's Corner >> New Supporter.  Needs Help!
        
(Message started by: Linda_Howell on Mar 18^th, 2008, 5:54pm)

Title: New Supporter. Needs Help!
Post by Linda_Howell on Mar 18^th, 2008, 5:54pm

I've transferred this from another post for her.

Linda

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Hi - I'm new to this site and my husband is trying to do this alone...he won't go to a doctor and will try anything - he gets one hit at 2:00 a.m., but it has been helped alot by melatonin - are there any other remedies we can do at home? I sat here and cried reading everyone's postings....I am beyond frustrated...this just started about 1 1/2 months ago and we discovered the melatonin about 2 weeks ago so hits haven't been more than a 3 or 4,,,but the other day he had a really big one and it lasted at least 4 hours......I was beside myself...he eventually went to sleep for 2 1/2 hours and when he woke up he felt so much better - his blood pressure while he was experiencing the pain was 155/96 and his pulse was 48!!!! when he woke up his pressure was 130/80 and pulse was back up to 60...I'm so glad I found this site...my husband is not computer literate but I am so I just tell him all the research I have done - but I would like him to see a neurologist - but he says they don't know any more than we do about this!

Title: Re: New Supporter. Needs Help!
Post by Mosaicwench on Mar 19^th, 2008, 4:15pm

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Hi - I'm new to this site and my husband is trying to do this alone...he won't go to a doctor and will try anything - he gets one hit at 2:00 a.m., but it has been helped alot by melatonin - are there any other remedies we can do at home? I sat here and cried reading everyone's postings....I am beyond frustrated...this just started about 1 1/2 months ago and we discovered the melatonin about 2 weeks ago so hits haven't been more than a 3 or 4,,,but the other day he had a really big one and it lasted at least 4 hours......I was beside myself...he eventually went to sleep for 2 1/2 hours and when he woke up he felt so much better - his blood pressure while he was experiencing the pain was 155/96 and his pulse was 48!!!! when he woke up his pressure was 130/80 and pulse was back up to 60...I'm so glad I found this site...my husband is not computer literate but I am so I just tell him all the research I have done - but I would like him to see a neurologist - but he says they don't know any more than we do about this!
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Oh I hope you find your post over here!

Hi - I'm Pat and I've been a supporter for 16+ years. My DH was episodic, then chronic, then in remission and now he's back to getting hit upwards of a dozen times a day.

I've walked in your shoes and know how you must be feeling.

Please try to explain to your hubby that there ARE good neuros out there. We've got one that I consider a member of our family. He's always willing to help, try most anything, and always listens to and reads the stuff we've heard about here.

If nothing else there is oxygen available which really helps my DH abort most of the attacks. There are no side effects for most people and it's a GODSEND! A good neuro would know this and prescribe it. Read up on the oxygen info over on the left side of this board. Maybe DH would go for that??

We're here whenever you need us and we've all been through something similar. Please feel free to ask all the questions you want - we'll try to help.

God bless you for supporting your hubby through this difficult time. It WILL end and we'll be right there beside you.

Title: Re: New Supporter. Needs Help!
Post by Mybelle on Mar 19^th, 2008, 4:41pm

Thank you so much for your reply - I'm a total mess - last night he had shadows only and I was freaking out! I don't sleep well at night even when he does! I guess we have to be grateful that at this point he only gets one or two a day and I'm praying that this will only go on for a few months and then he'll be in remission. I will check out the oxygen, as I said melatonin seems to work really well for him...... ::)

Title: Re: New Supporter. Needs Help!
Post by brewcrew on Mar 19^th, 2008, 5:00pm

Quote:

I would like him to see a neurologist - but he says they don't know any more than we do about this!

He may be right, but there's one thing a neurologist has that we don't - a prescription pad.

Title: Re: New Supporter. Needs Help!
Post by Mybelle on Mar 19^th, 2008, 5:18pm

I guess unless the pain is excruciating - he won't go....his pain level on the Kip has been 7 1/2 at the highest - but when I look at him it looks like 10! In any case, I thank you all for your input - it does help me - and him to know that he's not alone. Anyone ever use the melatonin at bedtime?

Title: Re: New Supporter. Needs Help!
Post by Mosaicwench on Mar 19^th, 2008, 5:21pm

Mybelle - brewcrew is my DH. He's right.

The neuro has access to a prescription pad and meds that could help. I hope your husband will consider it.

Title: Re: New Supporter. Needs Help!
Post by brewcrew on Mar 19^th, 2008, 5:34pm

A lot of people do all they can around here to help, but we can only go so far. The next step is your husband's.

Title: Re: New Supporter. Needs Help!
Post by Linda_Howell on Mar 19^th, 2008, 5:35pm

Please put what I am going to say squarely on MY shoulders.

Tell him I said to stop being so danged stubborn. >:(

Title: Re: New Supporter. Needs Help!
Post by Mybelle on Mar 20^th, 2008, 2:14pm

My husband has always been a natural kind of guy and anything prescription goes against his grain. Of course, if you have a Valium or something similar he will take that - he is a child of the 70's after all and pharmaceuticals were his friend - but anything with side effects totally puts him off - he is stubborn - and distrusting of doctors - he's had several bad experiences - but as I said before - the Melatonin is working at night - he awakens every other night with shadows and goes right back to sleep - that is a natural remedy and one he is willing to do - the oxygen he would do but he has to get a prescription for it - I guess he's not that desperate yet - I pray he doesn't get that way and maybe we've been blessed by the cluster fairy with a mild dose.......

Title: Re: New Supporter. Needs Help!
Post by Linda_Howell on Mar 20^th, 2008, 3:12pm

Quote:

Uh...O.K. I'm not understanding the contradictions here at all but that's probably just me.

Oxygen is pretty natural so hopefully you can convince him to get that.

Linda

Title: Re: New Supporter. Needs Help!
Post by Mybelle on Mar 20^th, 2008, 3:24pm

When I said child of the 70's I meant recreational drugs - so those are okay, because you didn't need a "condition" to take them - you took them for a specific reaction and you got it - so, you of course can overdose on them, but many prescription drugs these days have side effects that are almost as bad as the reason you are taking them for!!! That's his take - so maybe I can convince him to go get a prescription for oxygen......Thank you so much for your input - sometimes I think I need it more than he does!

Title: Re: New Supporter. Needs Help!
Post by brewcrew on Mar 20^th, 2008, 3:24pm

on 03/20/08 at 14:14:01, Mybelle wrote:

the oxygen he would do but he has to get a prescription for it - I guess he's not that desperate yet

Here's what I don't get - when you get truly desperate, you are willing to try things that might be illegal or might cause some permanent damage. Oxygen, on the other hand, is safe, legal, and effective. Shouldn't this be the FIRST thing he tries? If he's put off by going to the doctor, he can rig up some welder's oxygen himself. Breathing welder's oxygen isn't legal, but it's just as safe as the medical type. They often come from the same source.

Title: Re: New Supporter. Needs Help!
Post by Annette on Mar 20^th, 2008, 6:22pm

Apart from a prescription pad a neurologist also have access to another thing which can be equally important : a referral pad !

Its of paramount importance that he gets tests and scans such as blood tests and MRIs to rule out other possible nasties.

Other medical conditions such as Moyamoya, pituitary tumours, brain tumours, coartation of aorta, arterial malformation ... may produce symptoms very similar to CH and they need to be treated differently.

Other headaches such as Hemicrania, SUNCT, chronic daily headaches, BAM etc ... have symptoms overlapping CH but will benefit from different types of meds.

Stress can also adversely affect CH by either increasing the number of hits or the intensity of the hits and he may need a referral to a counsellor or some meds to help with that such as antidepressant.

Not all neurologists are knowledgable on CH but some are. If you tell us where you live I am sure the good people here will be able to recommend the best neuro for him to see.

Its not fair on you that you are being dragged down by his stubborness. I can see that its affecting you rather badly too. Please take care of yourself first and make sure that you are OK. Its his condition and he should be taking responsibility for it.

Hugs and painfree wishes to you.

Title: Re: New Supporter. Needs Help!
Post by Mybelle on Mar 20^th, 2008, 7:32pm

Thanks for the support - I live in the Los Angeles area, specifically the santa clarita valley and I only know of one neurologist - Thank you so much for your concern - I think we will try the oxygen - my cousin is a chiropractor and can get the medical grade I think - My husband's headaches are once a day at 2:00 in the morning or thereabouts and a random one here and there around 9 or 10 in the evening (just the shadows) I'm not be dragged down - I'm dragging myself down - People can only affect you the way you let them - I was okay with this a few weeks ago and suddenly something clicked in my head! Not a headache - I'm a worry wart I've come to find out in my middle age - my cover is blown!

Title: Re: New Supporter. Needs Help!
Post by Mybelle on Mar 20^th, 2008, 7:36pm

And our biggest concern - no insurance - He doesn't have it from work, I have insurance. Can't afford an additional $500 a month .........I know health is important, but so is eating........we have been able to work out deals with the doctors, and they are suffering also......I'm not worried about tumors or anything like that....if his headaches were worsening or there were other symptoms I'd be worried - this is something at least I'm not worried about!!!

Title: Re: New Supporter. Needs Help!
Post by brewcrew on Mar 20^th, 2008, 7:47pm

Be sure to get a regulator that will go up to a minimum of 15 liters per minute along with a non-rebreather mask (the little vent holes on the sides need to be completely covered upon inhalation).

And yes, food is important to good health as well. ;)

Title: Re: New Supporter. Needs Help!
Post by Superdave on Mar 20^th, 2008, 8:40pm

Quote:

Of course, if you have a Valium or something similar he will take that - he is a child of the 70's after all and pharmaceuticals were his friend

I use Melatonin with great results. Also had been using valume and various other sedatives to fight off the beast for 5 years before I found help on this website (Bc). The sedatives would knock me out so I could get through the night, it wasn’t real sleep, but at the time it was the only drug I new of that would help at all. I took a lot of it and I’m pretty sure it made my condition worse. I am chronic and was using valume since this condition appeared in my life. My Insurance co. won’t pay anything headache for me ( Pre existing condition they say) I pay for the office visits at a discounted cash price and my drugs come from Canada cheaper than if I were to use my insurance.

Stories like yours really get me were it hurts. I have lost 2 people that I cared for very much, they just didn’t know how to deal with this condition of mine and it was to much for them. To see you doing what you can to help your husband makes me feel all warm and fuzzy inside. It feels really good to know that the person you love is there for you, but for me, when your getting attacked there is no better place but alone in the dark. There really wasn’t much they could do but hand me an ice pack or whatever was the chosen remedy at the time. Then give me a hug when it was over. Of coarse I never got the hug.

God bless you
Superdave

Title: Re: New Supporter. Needs Help!
Post by Mybelle on Mar 20^th, 2008, 9:27pm

Thanks Superdave for your comforting words.....what strength Melatonin do you use? My husband seems to be okay with just 3 mg......would more be better? or just make him groggier in the morning? :-/