So, my husband Jay ( chronic CH for 5 yrs episodic 15 +) we to yet another neuro appt. he has been in probably the worst cycle I have ever seen. He recently asked me to end it all... not the first time he has aked for this but the first time in about 2 yrs. we have tried EVERYTHING, and today we were told there is nothing more that can be done for him. He is getting ready to loose another job due to the beast and his games and was told he can try for disability and stay home and dance all day long. Not really what we want to do. however disability is very hard to get for "headaches" and we will have to fight. We asked about trigeminal injections and all the other "expirimental" therapies and were told we are on our own. Dose anyone have ANY suggestions ?! I am at my end as well and can no longer sit back and watch the person I love the most suffer, where do we go from here ? PLEASE HELP.

Your supporter always,

Nichole 

Hi Nichole-

What has your husband Jay tried for preventativs and abortives?  There are many things you can try and with the right combination CH is manageable.  Lithium has worked for many chronics also Verapamil.  O2 is almost a universal abortive if administered properly.

If your Dr. is not cooperative find a new one.  You pay him for a service and if he does not provide a good service you fire him.  A good Dr. will take the time to listen and take suggestions.

-P.

  Hi Nicole,     Call me you have my number, if you would like you can talk to my wife(flipperlips) see is on this site also.  If you want to call I can call you right back so it wont cost you much $.
            Phil

Nichole, we know this frustration.  

Has your hubby tried histamine desensitization?  
Was the DHE a drip in hospital at high doses for a few days, or a slow drip, administred IM at home over a long period of time?  
Are you sure he was taken up to high enough doses of the verap/lithium - and in combo?  (Between 960 - 1200mg verapamil and between 900 - 1200mg lithium?)
Has he been to a headache center?

I'm sure other headache centers have similar paperwork, but if he hasn't been to a headache center, please take a look at this paperwork.  Being in CA, obviously going to Montefiore (located in the Bronx, NY) isn't a suggestion I'm making, I just want you to see the list of medications.  Some are appropriate to only migraine, but I expect there are things on this list that your hubby has not tried - especially if he's never been under the care of a neuro from a specialized headache center.

Here's the link: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or  Read down the page - you'll see the link to "Download the New Patient Questionnaire."  It's a Word document.

Forget their headache diary - it's for migraines.

But I REALLY recommend you start keeping a "headache" diary.  That's really a misnomer, because what you need to do is document EVERYTHING.  Do this for one month, two if you can.

Have hubby keep track of everything when he's not with you and help him keep track of everything when you're together.  But track the following:

Everything he eats and drinks (including water) and when
Everything he ingests, period, and when (including cigarettes or anything else)
Each attack and how long it lasts
Every medication he takes, when, and how much of it (including 02)
If possible, how much sleep he gets and when

Has he tried "busting" with RC Seeds or Psilocybin mushrooms?  Those often work for chronics non-responsive to meds, and there is a lot of support available if he decides to give it a try.  Feel free to PM me about it.

When at UCSF, did he see Dr. Goadsby?  He does see new patients.  Again, please PM me if you would like his e-mail address.  See if he thinks there's any point in your hubby coming up there again.  ????

Final question - did anyone bother ruling out Paroxysmal Hemicrania?  It presents like clusters, but the attacks are shorter duration though far more frequent.  It's a long shot, but he could be experiencing many attacks back-to-back that appear to be one attack.  Indomethican, an NSAID, almost always works to prevent these types of attacks, and thus PH can be ruled out in about 9 days (3 days of taking one pill a day, 3 days of taking two pills a day, and 3 days of taking 3 pills a day.  If attacks still happen, it isn't PH).

Do not give up hope!

Laurie

Time to try clusterbusters perhaps?

What was his dosage for verapamil?

DHE IV q8hrs over a period of several days (usually in the hospital) has normally worked for most (not all). The IM doses are only about 50% effective (according to my neuro).

How is he using the O2?  You said it works till he takes off the mask?
It needs to be at least 15 liters per minute with a non-rebreather mask. 25 liters per minute is better. Stay on it for a few minutes after the headache subsides.

Has he tried some Red Bull with the O2? (This has helped me with some really bad ones).

Get him to a neuro who knows what he's doing. THERE IS ALWAYS SOMETHING ELSE to try!!!

Has he tried topamax (ok some have had bad side effects, but...). It was the ONE thing that helped me when NOTHING would work and I'd tried EVERYTHING including surgery. It was brand new and  I just happened to hear about it about the same time my neuro did. It worked immediately and I've been "sane" and almost normal ever since - at least I can cope now and at that time - I was a basket case.

What I'm getting at is YOU DON'T GIVE UP cause you don't know what's gonna come out tomorrow...

Hugs BD

If the meds are not working for you go to Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or , he has nothing to lose . Be Well.. Coach Bill

BarbaraD wrote on Nov 12^th, 2008 at 3:22pm:


Another suggestion that has worked for some is to not stop the 02 immediately, but to slowly take down the flow rate from the 15 lpm or 25 lpm to 0 over a period of about 10 minutes rather than just abruptly stopping it.

Laurie

Thank you all again for your support..
To answer the questions, Jay has energy drinks readily available, he uses the O2 15-20 Liters for about 7-10 after the attack stops if time permits ( work ) , we are now living in a small town in southern oregon and there are only 2 nuerology groups and neither one will send him to a pain clinic because we do not want anymore narcotics and unless we travel 5 hrs away they do not do the injections here. we have tries ALL of the migraine drugs along with the others and none seem to work for a period of time greater than one hour. The doctors here have refused to admit him into the hospital for  IV DHE.
We are now looking at the clusterbusters as suggested. I don't mean to sound like I am griping..... well I guess I am. I am beyond frustrated and my husband is slowly changing into a man I no longer know. He is very mean and sometimes hateful ( though not hateful to me or the kids) he is miserable and the healthcare industry dose not care. I  work in the OR and can never imagine treting my patients this way or giving up on them so soon. He feels so alone ............

I ordered RC seeds and will post the results.

XXXXXXXhugsXXXXXXX
and big thanks, Nichole