frustrated and dont know what to do.

[formby]

Thank you for the welcome. I do not have CH but my husband does.We are desperate. I do not even know if I am looking in the right place for help but we have been in the emergency room three times a week for months now my husband Lamar spent last week in four days for DHE IV with solumedrol and torodol every 6 hours plus all the other crap he takes neurotin ,effexor,baclofen,topirimate etc...my husband is not able to work at all and I am a full time nursing student with two teenagers still at home .Our government insurance makes us jump through hoops to get the right meds and it took a while to finally get to the only neurologist around us that even takes the insurance to which we saw him one time he did not listen to us told us they were very common and kept calling them just migraines. I am not going to say what I have since written and told his office. after the hospital visit and no relief coming home to worse headaches they dropped him because we were to insistant he see us and discuss meds that might work. refereed back to primary that cant seem to even get his bupap or maxalt written for him. I am ready to bash doctors heads in with a hammer myself and see if they are in a hurry to find a fix for themselves at least!! soryy for my angerr but I dont know what to do.My husband has had this for 20 something years was in late 20 around 29 first episode thought it was sinus infection that is what ER doc said after going a few times a week in agonizing pain I have never seen before until this all started went away vefore they could clean ot the sinuses and didnt come back for five years always after the summer or winter solstice f -8 times a day lasts a few months then gone for five more years. Last ones were three years ago this last time and these he is having now are unreal and unrelenting and coming on both sides of his head not just one .He has used oxygen since the first neuro told him the sad news that he had this problem .He was very sorry to tell us that is what it was like he himself wished it was a tumor instead ,now I see why. I am scared for him to take all these medications and I have read and of course all of the kids know the wonderful healing powers of mushrooms that I do not agree with because my 23 year old spent three weeks in a behavioral center for becoming very schizophreninc from this activity although he is a little better now. My husband has become a shell of a man and I do not know what to do he is scared to try the mushrooms but I am scared of the steroids over and over and now it has been suggested he try verapimil an on top of the oxygen and evrything else. He already has hypertension. I do not know anything about mushrooms although I have had a relative that knows where to find them get me some and I am waiting to know for sure if it is the right and best thing to do .My husband does not want to try it but I think he will not last much longer and he will be willing to do anything I know I think I would have already poured bleach in my eyeballs and drank a gallon if I was assured it would make me better from something like this.The DHE in hospital IV worked like a miracle but we annot get it out of hospital .can some one please help us we are waiting to go to shands but I am begining to think they will have no better solutions than anyone else when we get there .I cant say his headaches are becoming chronic but he says they are differnet somehow and they are definately harder to treat than the last rounds .Second cycles found oxygen it knocked them out great alone time after that not so much needed neurotin, trazadone, decadron ,oxygen and endocin but they left faster with that .this time not so good. still trying to stay out of ER .I just dont know how to help him .I usually know how to fix things but I am scared.because of no insurance or shitty insurnace over 20 years have not kept neuro and everytime it is a fight to get somewhere for him to be treated properly .Sorry to vent and ramble I am tired and I am out of options for him until something happens. how much pain can someone take  I just don't know.

[Fabalicious]

Hey Formby,

So sorry to hear of your situation, although the familiarity of it rings true with a lot of CHers from what I have read.  I did not see Imitrex on the list of medication that your husband takes.  Even though this is not a good long term med (in my own opinion) it works fast, and does give you a pretty nice stick with which to beat the beast down for a while so you can think clearly.  After that the options are limitless as to treatments.  I suggest reading reading reading.  people here use so many different methods to treat, and since the beast is a little different with all of us, its really up to you and your husband which route you want to take.  If you try something and it does not work, try something else.  Just pick one that you think will work, lay out a game plan for implementation, and do it.  The people on this site are wonderful.  They are caring and helpful and will answer any questions you have about whatever line of treatment you choose.  Just don't give up.  There is a treatment out there that can help, its just up to you to find it.  Wishing you and your hubby BIG hugs and pain free days!

[Bejeeber]

Hi Formby, I just have a couple quick thoughts as I'm at my iPad before I have to bolt out the door here:

RC (rivea corymbosa) seeds can potentially bust CH but without the kind of psychedelic tripping concerns associated with mushrooms.

When o2 stops working, upgrading to higher flow, 100% O2 usually gets it working again!

There's a specific vit D3 regimen that even skeptical ol me has to admit can be surprisingly effective for some.

Are the attacks coming on both sides, but trading off, one side at a time? If they hit both sides at one time, well there are other conditions with a CH like intensity (and as far as I know, may be concurrent with CH) that may respond to other treatments.

Hang in here, you've come to the right place.

[CHfather]

Formby, there's a lot to deal with there, and a lot of our members are attending our annual conference right now, so you might not get as much of a reply as you otherwise would.

As Fab says, it's sad but true that your husband's story is like a compilation of most stories of people with CH.  And yours as a supporter, too (I'm a supporter myself). So many people here have been through all that he's been through, and are much, much better off today than they once were.  That is . . . There is hope!

Are you saying that he's currently taking all those meds (neurontin, baclofen, topirimate, +, +, +)?  That seems nuts.  And, as Fabac wisely observed, no injectable Imitrex???  Now, it might be that on your trip to SHANDS a doctor might at least sort that out.  I don't know what to say about all those meds -- I feel kind of flabbergasted, and if he's taking all that crap (and even that doesn't seem to be working), it's hard to know what to recommend.

It seems to me that the first thing you want to do is try to get his oxygen working well again.   Because it worked before, I'm assuming that he has a standard system -- a flow rate of 15 liters per minute and a non-rebreather mask.  Is that correct?  Do they not give him oxygen at the ER?  (I'm just wondering whether it works better there, if they do.)  There are two (or maybe three) things he might try right away for his oxygen system:

(1) try drinking an energy shot (like 5 Hour Energy) or an energy drink (like Monster or RedBull) at the first sign of an attack, just before getting on the O2. Frankly, I'm even a little nervous about recommending this caffeine jolt because of all the meds he's on, but it does help a lot of people.

(2) Remove the bag from his mask and replace it with a turkey roasting bag or an unscented kitchen garbage bag.  That will allow him to breathe more deeply and quickly without having to wait for the standard bag to fill.

(3) Consider trying different breathing strategies.  For example, hold the air in the lungs for a couple of seconds before exhaling; look down toward the feet while doing O2; consider hyperventilating.

You/he should read the ClusterBusters Oxygen Page under the black and white MENU tab on the left side of the page.

It's premature to talk about "busting" -- using substances like "magic mushrooms" to treat CH.  He would have to be off many of his medications for at least five days before doing any busting, and that doesn't seem very feasible right now.  So I will just say two things about busting: (1) There's is practically no one here who likes using psychedelics. They do it for the same reason your husband would -- because it often works and it's better than CH pain and the side effects of standard CH drugs; (2) There are busting substances he could try that would be very unlikely to cause him any kind of serious "trip" (or any trip at all), but that still work very well.  So this might all be worth considering when he's ready, and when he's able to get off the drugs.  (Yes, people do that, even people in situations similar to his. But having effective oxygen is critical for that.)

Two more things: (1) To learn more about busting, go to the numbered files in the ClusterBuster Files section of this board; (2) You might want to also visit the site www.clusterheadaches.com. That site is populated with a lot of very helpful people who typically use standard CH meds rather than busting.  You might find some valuable thoughts there.

We're here and happy to help as much as we can.  Like I say, folks here have been where he is or where you are.  There is hope.

[Jp2000]

https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=139121354

The above link is a list of recommended doctors that I stumbled across while I was checking out the boards the other day. check to see if there is anyone in your area that you could possibly utilize.

And a big thanks to all those that helped put it together!