Hi, I'm Valerie. I'm 28 years old and live in Indianapolis. I was just diagnosed with clusters last week. I've been dealing with headaches for nine years. Recently they've gotten out if control. I'm still able to work with a fairly understanding boss, but they are slowly taking over my life. I have a few questions but mostly just looking for someone to talk to. I have family here but they don't understand really.
Thanks in advance,
Valerie

Welcome Valerie.....just start asking questions....someone will pop in and answer.

Hi Valerie, you're part of the worldwide CH family now, so just start asking questions here. Day or night there are people around from around the globe.

Tell us about your doc: specialist in headache?; how mluch experience? What is his treatment plan for you?, i.e.,what meds/doses?

Re. your questions: try and be specific. After reading here for a few days you wil begin to develop questions which are of value to you.

My Dr.s name is bakul patel. He's a neurogist that specializes in headaches and pain managment. He has me taking  gabapentin 300mg twice a day, cymbalta 60mg, indomethacin er 75mg, trileptal 300mg twice a day, zanaflex 4mg at night. He gave me tramadol for my headaches but it does nothing so i don't take it. He gave me pred to try and stop my cycle but it's a lower dose than has ever worked beforr. I asked for o2 or lidocaine and he said we'll talk about it at the next visit on july 11th. So i just get to suffer til then. Monster somewhat helps. Any suggestion on what i can do until then.
Valerie

Hi Valerie

Tramadol is useless for CH. It isn't going to touch the pain and being a narcotic is likely to introduce other problems.

I can't understand why he is not giving you oxygen, which is one amazing abortive. Using 25lpm and a non-rebreather mask I can kill off my CHs in about 5 minutes. There is no comparison between oxygen and tramadol in which is the superior way to deal with a CH.

The other drugs are not the most common ones used to prevent CHs (verapamil, lithium and topomax are much more common). However there may be other reasons from your medical history that dictate why this mixture has been used.

Lots of people here use welding oxygen for aborting CHs. It is just as pure as medical oxygen as otherwise welds would fail. That may be an option for you.

Also read up about how people are using vitamin D - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. Lots are getting good results with this.

why do u need a prescription for oxygen if u can get welders oxygen without anything? and how exactly do i get this? i'm thinking about trying a different dr but at least this one figured out the problem. so have to give him some credit.

If you get welders 02 you can't tell them it's for human consumption...silly, I know!!!

Joe

That's ridiculous. So will they deliver to a house?

i got the vit d3, calcium citrate and fish oil. having trouble getting o2 any idea's on where else to get welders o2 batch said harbour freight but ours doesnt lease it.

Budbuds Mommom wrote on Jun 24^th, 2012 at 3:58pm:

i got the vit d3, calcium citrate and fish oil. having trouble getting o2 any idea's on where else to get welders o2 batch said harbour freight but ours doesnt lease it.

A Google search for welder's supply stores...START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Harbor Freight does carry the reg you'd need for a welder's tank. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

So I think I'm gonna have to go on an intermittent leave for a while at work. I can't afford to lose my job over something that I have no control over. Hope my boss understands. I love my job finally... This sucks.

Forgive me but your Doctor appears to know little about CH. That's all too common. Please print the Oxygen article below and see what he says.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Many of us have had to teach our Doc's about modern CH treatments.

Welcome to CH.com and Good Luck..

Don

I feel the same way. I've made an appt with an ouch dr but earliest he has is oct. 2nd. Guess I'll have to try to teach the one I have for now.

Budbuds Mommom wrote on Jun 25^th, 2012 at 11:31pm:

I feel the same way. I've made an appt with an ouch dr but earliest he has is oct. 2nd. Guess I'll have to try to teach the one I have for now.

Ask about cancellations, which can be a good way to get in at short notice, especially if you can be flexible on when you can attend.

My advice, get another doctor. That drug cocktail he has you on will help little and is likely to cause a variety of side-effects if taken long-term as it is very taxing for your liver, kidneys and brain. Some of those medications separately, may be effective, but putting you on a mix of that scale is dangerously inefficient.

The reality is that depending on the frequency and intensity of the attacks, there are few viable remedies. Oxygen is the most common and has beneficial effects for a lot of people, especially night sufferers.

Other possible drug treatments include Imitrex, Dihydergot, Verapamil, Methysergide, Cafergot, Lithium, Ergotamine, Botox, Psilocybe "mushrooms".

I can't take the dihyergot or whatever its called it makes my headaches go nuts the frequency and intensity increase at least 3 times. Imitrex somewhat works however the injectable makes my scalp burn. Anyone else havethat side effect? My dr is having me come in tomorrow im going to beg for o2.
Valerie

My scalp would have to catch fire for me to stop using the injectable.  If it works on the CH and you can get your insurance to cover it - I would stick with it.  I almost find the small side effects I get from a shot soothing.  Once I feel them I know the pain is about to go away - which is a rush in itself.  Almost like a good sneeze........

Also - the Prednizone taper I am on (started last Friday) seems to be working.  Will see what happens when I go off it.  Having a few mild side effects, but nothing near what the CH does.

Finally - I have done a massive amount of research (that's how I found this site) and have been using a Nurse Practioner for years.   The one I have now is awesome - as long as she can research what I am asking for and find back up literature she seems game for trying whatever works.  I think NP's may be a bit more open than MD's?

i saw a NP just the other day for a ch i couldn't deal with. she seems to be the most understanding. she kids about shooting me up but doesn't make me feel like a druggie or something... without a good abortive that's about my only choice. i have an appt tomorrow with my neuro we'll see what happens i want off cymbalta cuz i want my imitrex back.
valerie

Valerie,

    Are you Chronic or Episodic? Treatment is kind of the same but slightly differant depending on your case. Try finding a better Neuro I cant beleave they didnt even give you some samples or anything. I am Chronic CH'r and i Take Topomax 100mg, Lithium 900mg, Sumavel Dosepro or Imitrex StatDose, zomig (Nasal) and Relpax (pill), and prednisone which im only aloud to have 2-3 times a year because it is so harsh on your body.

I'm chronic. cant take topamax makes my face and fingers numb. Its not samples thats the problem I have fairly good insurance I just cant get him to prescribe anything that helps

The NP wrote me a script for 24 shots and an additional 5 refills.  Will send that up to the canadian pharmacy I use and will have the peace of mind knowing I can get another 24 in two weeks.

Just got my next refill (which is awesome because I was down to two shots).  Probably going to do one more order and then wait.  Hopefully this pred/vermap works.  Would be nice to be in the 80%. 

On the down side - just had a CH at work.  Shot kicked its butt, but that is the third one since starting the new meds.  No panic yet - I was getting 3 to 4 a day last week.

Wish me luck - and good luck to you.

PS - the imetrix i get is called Imigran and is the name brand, but made in Turkey.  Costs between $24 to $30 per dose, which is by far the cheapest I can find.  On an HSA, so drugs come out of my pocket - no real prescription coverage till you hit max out of pocket - want to save the HSA account $$ so if something really bad happens I am covered.  I can afford the trex assuming this cycle ends someday.

Yeah you definitely need to see about finding a better Neurologist even if that means having to travel to get to a good one. Its getting your life back we are talking about and even if you can get O2 it is good and it is better then nothing but that alone isn't always going to work. Try googling Headache specialist and the biggest city near you and see what you find. Also call you insurance company and tell them your trying to find a headache specialist. I'm not saying travel 5 hours a way but and 1 to 1 1/2 drive is not that bad if it will bring you relief.

I found one he just has a horrid wait to get seen the first time

Have you made any recent ER trips due to CH if so sometimes if you fax over that they will fit you in sooner.

No my gp usually fits me in asap and its way better than waiting in the er.

Got put on lithium and neuro researching o2 so some improvement I guess

Finally slept thru the night! I don't know if somethings working or if the Ativan just knocked me out but no 1:30 am or 4:30am ch. YAY!!!

Awesome.  Half way through the taper.  Feeling better and no CH in last 24 hours.  Fingers are crossed.

good luck hoping for the best for you. i'm having a pretty good day too!

so frustrated... wish i could get even 2 nights sleep in a row without stupid ch's waking me up! Las night i had 2 one at 1:50 and one at 4:30.

I also live in Indy and am looking for a CH specialist. My GP seems to be trying his best, but all treatments lean towards standard migraine treatments. I'm on my own drug cocktail right now and hoping for some suggestions/recommendations.

I found Dr. Alonso on the ouch website cant tell you much tho only had one appointment so far. He seems good but there is a 3month wait to get in to see him. He's an iu dr across from methodist. I live in greenwood maybe we can get together sometime

I found Dr. Alonso on the ouch website cant tell you much tho only had one appointment so far. He seems good but there is a 3month wait to get in to see him. He's an iu dr across from methodist. I live in greenwood maybe we can get together sometime

That's funny you mention Dr Alonso.  I called him this morning and scheduled my first appt with a doctor in his group for Dec.  I've seen neurologists in Chicago, but I need someone closer.  I'll let you know how things go.

By the way, Dr Alonso's first available appt isn't until mid Feb.  That's a full 5 months from now.  Hard to believe someone could actually wait that long...

I waited almost 4 months

I got sick of messing around with dr's that didn't know how or didn't want to try treating me and I was told he was the man to see so I waited

Hey old pro here 30 years now any help you need just shout