Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Cluster Headache Help and Support >> Cluster Headache Specific >> just diagnosed
        
(Message started by: midwestbeth on Dec 6^th, 2006, 12:04am)

Title: just diagnosed
Post by midwestbeth on Dec 6^th, 2006, 12:04am

Hello,
I'm new to this board. Just diagnosed myself with cluster headaches. Started getting them last spring. I thought I had a brain tumer or was going to have a stroke. When I stumbled upon Cluster headaches and the symptoms online I couldn't believe I was reading exactly what has been happening to me for almost a year. I am now in the process of finding meds that are affordable. (I do have good insurance) The Dr. gave me free samples of Frova and that did help but $200 for 6 little pills that would not even get me through the weekend is a little steep. Imitrex is almost as expensive and I did not get any relief in the past with Imitrex when I had a migraine so I'm not paying $130 (9 pills)for meds I'm not confident will work for me. I am taking one Altolonol (sp? I don't have the script bottle in front of me) everyday, but I won't know if that is helping until I've taken it for at least a month. Does anyone know of any affordable abortive meds out there. I'm not poor, but I can't afford 800 to 1000 a month to be pain free. I'm freaking out because I know the pain will start again I don't have anything to stop it.
By the way I'm female, 40 with a supportive husband and three kids age 13 - 20.

Title: Re: just diagnosed
Post by AussieBrian on Dec 6^th, 2006, 12:07am

Over on the left is a button marked "Oxygen info". Great place to start.

Title: Re: just diagnosed
Post by BB on Dec 6^th, 2006, 1:10am

Hello

Welcome and painfree wishes to you.

There are several medications that can be used as abortive. The cheapest are oxygen, cold air and ice, also many use hot/cold showers and vigorous exercises. Of these oxygen is the most effective for many CHers. Next you may wish to try Zyprexa. Prednisone taper can also help block the hits while Atenolol kicks in.

Although abortive meds are great, its really important to have preventive meds started as soon as possible. The number of hits per day may be too high for any abortives to work properly.

Spend some time reading the Board and see which methods you would like to try and discuss that with your doctors.

All the best.

Annette

Title: Re: just diagnosed
Post by midwestbeth on Dec 6^th, 2006, 8:50am

Thanks. Today I'm going to try and find a good nuro who understands clusters. Also I had been cutting down on caffiene thinking that was a trigger causing the CH. Since cutting out the caffiene the CH have increased. I'm stopping to pick up Red Bull on my way to work.
Beth

Title: Re: just diagnosed
Post by BarbaraD on Dec 6^th, 2006, 9:23am

Red Bull and O2 (with ice packs) is a good start.

I take ergotomine (about $30 for 30 pills) as an abortative. It's worked better over the years than Imitrex (and the pills are useless -- if you take Imitrex get the injections). The ergotomine comes in CafergotPB (make sure it's the PB for nausea) suppositories - they work faster than the pills. I also take 25mg of phenergan with the pills for the nausea.

Interview your neuro -- if he/she doesn't know about O2 - go shopping for a new doc. There's a list of "recommended" docs on this site. You might want to check it out.

Sorry you had to find us, but welcome to Clusterville.

Hugs BD

Title: Re: just diagnosed
Post by marlinsfan on Dec 6^th, 2006, 9:57am

on 12/06/06 at 00:04:07, midwestbeth wrote:

Just diagnosed myself with cluster headaches.

Welcome! Self diagnosis can be dangerous. Get yourself to a Neuro ASAP to get properly diagnosed.

Read here for a good list of meds.

http://www.brightok.net/~mnjday/chtherapy.pdf

PF wishes.

Title: Re: just diagnosed
Post by Guiseppi on Dec 6^th, 2006, 4:44pm

I use lithium as a preventative when on cycle, 1200 mg a day. Then it's oxygen for the ones that break through. I have to take a cafergot when I start the oxygen, or as soon as I stop the oxygen, within 10 minutes, the headache is back.

You'll find most people have some kind of combo that works for them, both with the preventative and the abortive, the bad news is it's mostly trial and error.

Hoping you have a short trip to relief.

Guiseppi

Title: Re: just diagnosed
Post by Giovanni on Dec 6^th, 2006, 6:07pm

on 12/06/06 at 08:50:55, midwestbeth wrote:

Also I had been cutting down on caffiene thinking that was a trigger causing the CH. I'm stopping to pick up Red Bull on my way to work.
Beth

Don't cut down on the caffiene......it's our best friend during these cycles.

John ;)

Title: Re: just diagnosed
Post by mathieulives on Dec 6^th, 2006, 7:24pm

on 12/06/06 at 18:07:07, Giovanni wrote:

Don't cut down on the caffiene......it's our best friend during these cycles.

John ;)

I agree, red bull got me through many episodes where i didn't have any abortives or my body was so exhausted from all the imitrex shots... Here's to being pain free!!

Title: Re: just diagnosed
Post by E-Double on Dec 6^th, 2006, 8:44pm

on 12/06/06 at 09:57:52, marlinsfan wrote:

Welcome! Self diagnosis can be dangerous. Get yourself to a Neuro ASAP to get properly diagnosed.

Read here for a good list of meds.

http://www.brightok.net/~mnjday/chtherapy.pdf

PF wishes.

What my southern brother said!!!!

Title: Re: just diagnosed
Post by jon019 on Dec 6^th, 2006, 10:27pm

Hi beth,

Yup, what they said. As for caffeine, it is my friend, provided I use it judiciously. Too much or at the wrong time causes more problems than it helps. I cut down completely on regular use and just use at first sign of hit (or even just prior to an expected hit time (when in cycle).

Regards

Jon

Title: Re: just diagnosed
Post by midwestbeth on Dec 7^th, 2006, 12:18am

I did get confirmation on the clusters by the 2nd Dr. (internist) I went to. The 1st Dr. (ear, nose & throat) told me I was having migraines and I've had migraines before and knew this was another animal entirely.

When I started reading about cluster headaches online I was actually relieved that I now had a name to what I was going through. Now the only fear I have is the next one that hits me and I want to do anything possible (no narcotics!!) to make these wide awake every night nightmare episodes go away. I have been referred to a headache specialist Dr and will be making appt tomorrow.

One thing I haven't mentioned is that the ear, nose and throat Dr. found the right side of my thyroid very enlarged. I hadn't noticed. All blood work came back normal and I'm not experiencing any hypo or hyper thyroid symptoms. I am going for ultrasound and biopsy in the next few days. Related to clusters???????

Thanks to everyone for the info, supprot and concern.

Beth