Hi my name is Lydia I'm a 23 year old female with a 4 year old daughter who has been battling these awful headaches since I was 7 =( have been misdiagnosed until about 2 months ago. First I was diagnosed with chronic migraines then the medication they gave me would not help and the pain was always behind my eyes so they said maybe its your sinuses not your head. So I went to a ENT and they did balloon sinoplasty and nothing. No relief then my ENT said you know maybe its cluster headaches so sent me back to my neurologist where she said well it sounds like them but your a girl AND GIRLS DONT GET THEM! and you don't drink so I don't think that's it. Then about 2 month ago i went to the ER because i couldn't deal with the pain anymore and the head neurologist was there and he said that That without a doubt I had Cluster headaches and to keep a headache journal and give it to your neurologist he diagnosed me with cluster headache and told me to take my ER papers to my next appointment. well during that month I had a total of 23 headaches, i just saw my neurologist and now she thinks it is clusters and prescribed me oxygen and neurontin. has anyone tried this ? will it help ? I don't know how to deal with this i cant be a mother when I'm going threw all this pain i would rather give birth then have these headaches. they depress me and make me not want to live

Hi Lydia and welcome to the forums.

Its amazing how it take years for some people to get diagnosed, often due to neurologists having inaccurate information like females not getting CHs. At least now you have a diagnosis and can start to work on getting the correct treatment that will work for you.

First off you need a good preventive. Your neuro has prescribed neurontin which is normally used as an anti-seizure medication. This has been used for CH prevention however it is not one of the more commonly used ones, like verapamil, lithium or topomax. However there could be valid medical reasons why your neuro has chosen neurontin or it could be that they are not aware of the others.

Once a CH hits you need something to abort it. You've been given oxygen which is amazingly effective when given at high flow rates 15lpm or higher (higher is better) via a non-rebreather mask.

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Where are you in the world? There are people here on the forums from all over, so by saying where you live people can give you localized information.

Keep reading as there is so much here to help you and ask questions galore.

You'll soon know more than most doctors about CH and be able to more effectively treat your CHs.

Hi Lydia,

Hang in there and always remember your daughter is your world, CH's are only part of your world.

Once you get stabilized on preventative and abortive treatment, life will be better and parenting will be very enjoyable again!

Welcome to the board Lydia. The good news is you do not  have to live like this anymore. ;)

Read the link Mike gave you on oxygen. I'm a 33 year CH'er and NOTHING compares with oxygen to abort my attacks. I average 6-8 minutes from "oh shit here it comes" to pain free. But it must be used correctly or it's worthless. The keys:

High flow rate of at LEAST 15 LPM, preferably 25 or better. A NON RE BREATHER MASK. Nasal canulas and re breathers don't work as the key is getting 100% oxygen to your lungs at a rate to support hyper-ventilation. Get on it as soon as you feel the attack coming on. A delay of even 2-3 minutes will increase my abort times by several minutes.

I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief. That's what he's using the neurontin for.....but that shouldn't be a first line prevent as Verapamil has a substantially better track record.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. When my cycles start, I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what?  As mentioned above, Oxygen should be your first line abortive. Here's that link again for the oxygen:

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the medications section of this board and read the post "123 pain free days and I think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can. Yeah, girls really do get CH. Even of they don't smoke or drink. There's still a lot of CH Myths out there we're trying to overcome through education. Welcome home.

Joe

Hey Lydia! We feel your pain (literally) and always remember you are far from alone! Hopefully your new meds + oxygen will kill the demon...+1 on Guiseppi's post...oxygen for me has been a godsend as well. For many, it has been a trial of the right combination of meds, abortives, and yes, even doctors. I consider myself BEYOND lucky, even though I'm deep into a cycle now after a few years. Please update and let us know!

Hi Lydia,

Well the good news after so many years of your being royally screwed over by blundering doctors is that you very likely DON'T have to live this anymore. Phew.  :)

These are some very legit replies you've had to this topic so far, and Giussepi's extensive but condensed survey of the most effective treatments is a true motherlode!  :)

Personally, after 30+ years as a CH'er, and after having been on a bazillion drugs and junk, I'm partial to the extremely powerful non toxic CH fighters, mainly because they are the most effective for me (and for lots of others too).

They are:

1)  HIGH FLOW 100% O2

2) The clusterbusters approach
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3) The D3 regimen
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About your Neurontin prescription - it typically takes awhile to kick in, maybe 9 days or so. Some CH'ers swear by Neurontin, some swear at it. From what I've observed, it appears more members here swear at than by. My personal experience with it is that at high doses it prevented a good 50% of my attacks and the side effects weren't bad.

Hello Lydia, and dittos to all the above. Neurontin is an old line preventative and, at least in my case, coupled with ergotamine derivatives. It made the world nice and fuzzy, but didn't do anything for the pain. Forgot to look above, but if no one mentioned the use of energy drinks (Red Bull, Monster, etc) as an assisting abortive when coupled with O2, please consider it. Many of us have found if we chug down a drink that includes both caffeine and taurine (1000mg+) it can not only help the O2 abort the hit, but also work to prevent a return hit later. Let us know how you make out. Blessings. lance

thanks everyone for there reply's i actuallly had serious side effects to the nerontin and my doctor told me to get off of it. she suggested regalin *spelling* but said i would have to have weekly visits with her to be perscribed that and i work a 9-5 monday threw friday and her office does not open til 9. so that is out of the question; she perscribed me oxygen and i tried to get it but insurance cannot cover it because it is considered experamental and a month would be $270 and i cant afford that at this time. My doctor also tried maxalt for when an attack started but did not help. i gave up on that doctor because i felt like i knew more about CH then she did and have just scheduled a appoitment with a new nero/pain management spec. for march. in the last 3 weeks i have been in the hospital 4 times because i could not get it in control and i felt as if i was really going to die. Im praying this new doc can help me because i just cannot live like this =( thx you guys again for all of your support and i hope the best for you guys=)

You can't take time off for a doctor's appointment?

Hi Lydia,
1. You need to take time off from work for your appt.  Your employer is secondary to your health and peace of mind.

2. Oxygen can be obtained TODAY from a welders supply shop w/o a prescription.  Rent/purchase a large tank of at least 200 cubic feet of o2.  Just don't tell them you are breathing it.

Hyperventilation is necessary to abort attacks with o2 and flow rates need to be 25 lpm to 40 lpm to hyperventilate.  You will need to get a high flow regulator from FloTec or Harbor Freight Tools, etc. to achieve hyperventilation/fast abort. 

Lastly, you will need a NON-rebreather mask that you can order for next day shipping from the ch.com store on this website.

3.  Take a good understanding look at the meds section and comprehend the categories of Transitional, Preventive, and Abortive treatments. 

Each category includes best known meds that help CH's.  Don't trust a dr with any other med suggestion except from those listed on this site, as we here on this site know more than any doctor.  No reason to reinvent the wheel.  Make suggestions to best known meds from each category with backup info printed to share if there are is any hesitation from dr writing scripts.

Good Luck! ;)

-Gregg in Las Vegas

Oh man do I know how you feel Im not a girl and haven't been getting them since 7 it was more like 14. I'm 26 now and over the last 8 years prolly 5 of them have been plagued by these.  Always in the summer and I don't know about some people I get a lot of them and I mean a lot but there short which is good but they make sure there always like a 9 on the pain scale spiking to 10 always.  Last cycle in August 2011 halfway through I was getting 4-5 a day that whole month so I had over 100 easy that month and most of September till 9-26 when they stopped. ;)

I really felt like ending my miserable existense of a life and just be done with this but I didn't.  Just be strong if other people have been doing it for over 20 years or so you can do it as well won't be easy but its very possible.

Good luck with everything, who knows maybe in the next few years or most likely in our lifetime they'll come out with some wonder drug to block these out forever.  No person should ever feel the kind of pain we have to go through.  People who don't have them really cant understand the pain were going through is just that bad.

Lydia I am so happy/sad that you are here. I won't bore you with the details of my 26 years without finding any preventative or abortive. I will say that so many people have found relief with O2 that that is a (no brainer), place to start. Where do you live so that we can try to help find a good doctor that actually knows something about CH. If that is not practical then you may have to find a good open minded (usually young) MD. and educate them yourself. Everything you and they will need can be found on this and the "Buster" site.

Don't just start googling CH as there is a lot of dis-information and downright quackery out there. You will find none of that here.

You need to live! Just not necessarily the way you have been. Best wishes.......Tim

I live in Northern VA near Washington DC. When they give me oxygen at the hospital it never helps i dont know if its that im not catching the headache soon enough or whats wrong but it is horriable and i am getting headaches that are about 4 or 5 a week and last for about 4 hours goes away on its own then when i fall asleep im normally awakened and 1am or 2am feeling lke my eye is being stabbed then rub my eye throw up try a heating pad try and take benadryl to try and make me get some sleep. =(

Hi Lydia. Generally, the O2 given you at the hospital is less effective for two reasons: one, as you say you are getting to it rather late in the attack. We know the sooner you hit an attack with high flow O2, the easier it is to abort. The longer you wait, the harder it is. Second, they will give you a rebreather mask, one with holes on the sides and one flapper valve so it lets in room air as well. This room air prevents the O2 from doing its magic. We need nonrebreather masks and nothing but pure O2. The benadryl may help on the shadows or lower level hits, but not as a rule.

You need to get in to see that specialist as soon as possible. And line up welder's O2 if that's all you can get. Relief isn't so far away, it just seems as if it is. We suffer alongside and with you. I pray you find relief soon. God bless. lance

These people know what they are talking about..

Quote:

AND GIRLS DONT GET THEM!

BBBwwWWwhhhhaaaaaaa!!!!!!!
The 02 is your ticket.
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the bb :D :D :D :D ;D ;)

Get the O2. Most of us have our own set-ups with an initial one time investment of around $100. If you buy your own tank that can add $300+ but is not necessary. You can rent filled tanks at welder supply places, and the ongoing costs are only that fee... usually between $15 and $45 depending on the size of the tank. Then carefully follow the directions given on the oxygen page.
Good luck.

Lydia, welcome to CH.com. You may try getting a letter of medical neccesity about the O2 (oxygen) from your Dr. and try that with your insurance. O2 is one of the most effective treatments we have for CH.

Below is the "cluster quiz", it covers some points about CH.

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Best of Luck,   Don

Hello Lydia and Welcome to Clusterville

  Tomorrow, call your local medical supply stores and ask what their cash price is for "E" tanks (those are the green-topped 3'x4" tanks seen in the little carts in any medical facility).  Rates vary widely.  Some have deposits on tanks or monthly fees.  I pay $10 per tank, no deposit, no limit on tanks (I keep 20).  An "E" tank will give you 45 min of 02 at 15 lpm.  I you use it at the first sign of attack, you can kill the beast in 5-10 minutes BEFORE he ramps to the "dance" stage.  A night hit already has a head start (no pun intended) and may take 20 min. to abort.  It does take some practice and definitely the proper flow-rate and mask . . . but IT WORKS for most of us.

  I just posted on Batch's "123 Days PF & counting . . . ." thread.  I've been chronic since 1/01 . . . now PF since mid November and I believe the D3 regimen is what's working for me.

  Keep reading . . . keep asking.  Here, the answers you receive come from folks who truly know your pain.

    Be Safe,   PFDANs

      Richard

lydia nichole wrote on Feb 8^th, 2012 at 4:59pm:

...awakened and 1am or 2am feeling lke my eye is being stabbed then rub my eye throw up. =(

Same here, Lydia.  When I'm really getting hit, it seems my body reacts to it by throwing up.  I've had some really fun times with banging my head on the porcelain in between throwing up in it.
Talk to your neuro about Sumavel.  It's an auto-inject of a vasoconstrictor (sp?) like imitrex.  If your insurance covers it, it can be a God-send....or it is for me anyway.  Like so many 'remedies' talked about on here, not all work for everyone. 
Good Luck and remember, you're not alone in this.

Hey Lydia,

You need an oxygen flow rate of 25 to 40 liters/minute to ventilate the lungs sufficiently for oxygen therapy to be really effective as a cluster headache abortive with rapid aborts averaging 7 minutes. 

The extra lung ventilation lowers arterial CO2 content to make this possible.  Lower oxygen flow rates cannot do this and become less effective as the pain level rises. They are basically useless when the CH pain reaches level-7 as the average abort times are very long, well over 20 minutes.

You've got a couple options for regulators capable of delivering oxygen at these flow rates...  Flotec 0-60 liter/minute regulator or a welder's oxygen regulator.

25 liters/minute is as high a flow rate you'll get from regulators provided by home oxygen service companies...  and then your Rx must say "25 LPM."

Flotec makes two product lines of regulators that deliver 0-60 liters/minute like the Flotec InGage™ regulator shown below for ~ $195. This is a top of the line oxygen regulator that's very rugged and the pressure gauge is internal, hence the name "InGage." 

This regulator can also be ordered with a DISS check valve for use with a demand valve also shown below with the O2PTIMASK™ kit from the CH.com store tab in yellow at the left of this post.  You'll need a good non-rebreathing oxygen mask and this is it...  I've had one for five years and it still works fine.  The disposable oxygen masks provided by the home oxygen folks will fall apart after a few weeks of use.

It comes with a knurled ring that let's you hand tighten the regulator to the oxygen cylinder's CGA-540 fill fitting...  All other regulators will require a 10" Crescent Wrench every time you change oxygen cylinders.

The have a less expensive product line of regulators capable of 0-60 liters/minute that run around $150.

I lived in Lake Ridge, VA for 20 years and got my oxygen from Roberts Home Medical in MD.  Have your doctors office phone or fax your Rx for oxygen therapy to them.  The phone number at Roberts follows:

8100 Gatehouse Road
FALLS CHURCH, VA 22042
(703) 385-8018 • (866) 929-9599

If you  have your own regulator and mask, an M-size oxygen cylinder runs around $30. With insurance my copay out of pocket cost was $6 for an M.  If you're having an average of 3 CH every 24 hours, you'll need three of the M-size oxygen cylinders for a one month supply as shown below.

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Here's another photo of my "Roadie" aluminum M60 with a Flotec InGage™ regulator that I used for local travel and work.  It sits unused in the closet under a plastic bag since I started using the anti-inflammatory regimen with 10,000 IU/day vitamin D3 in October of 2010.

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Roberts will deliver your oxygen cylinders on a schedule or per call basis so you don't need to do any heavy lifting.  The steel M's weigh a little over 70 lbs.

If the Flotec oxygen regulator prices are too steep... there's always a Welder's Oxygen Regulator from Harbor Freight Tools for $35.

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You'll need a crescent wrench to attach it to the CGA-540 cylinder fittings on the M-size medical oxygen cylinders and all welders oxygen cylinders.  You'll also need to do a little trial and error to determine the best regulated pressure for the shortest abort times.

Take care,

V/R, Batch

sooo i have tried the oxygen and it does not help me =( i have found however and some of you may not support it but Marijuana helps ! as long as i smoke right when the attack starts before it reaches a 7 in pain ! after a 7 in pain it really will not do much but atleast there is something that is working for me. just wish i didnt feel like i am commiting a crime because of it =( but in my eyes it is a non-addictive way to handle and abort the attacks and can still be functional so that makes me happy. my doctor perscribed me tramadol and it worked for about a month and does not seem to help anymore.

Welcome Lydia,

   I see it's been mentioned here, but I'd like to add another endorsement for the vitamin D3 regimine (Meds, Treatments, Therapies section of the Message Board in the "123 Days PF & counting . . . ." thread). All over the counter, cheap, and effective for alot of us (myself included). It's a very long read, but it's worth it.

Keep reading the site and ask questions. There are some amazing folks here with an incredible amount of knowledge.

-dvb

Quote:

some of you may not support it but Marijuana helps

It's not that we don't support it - it's that the effect it has on the blood vessels is the opposite of what brings relief to this condition. It is vaso-constriction that is required to stop the pain, and weed is a vaso-dilator.

I'm wondering if you have, once again, been misdiagnosed.

I have had MRI's Cat scans xrays; ballon sinoplasty, wisdom teeth pulled. i do have a cyst growing on my spine in my neck which i am gonna have surgery on. my doctor beleaves that is what is causing my cluster headaches. but there is no doubt that i have cluster headaches. i have been diagnosed by 3 doctors now. and i thought cluster headaches accure because blood vessels are expanding because the blood all starts ruching behind you optical nerve. So if that is the case weed would make be a good idea because it helps relax dialated blood vessels i swear it works for me but everyone is diffrent. 

Lydia,

The odds are high you're vitamin D3 deficient and this deficiency is making your CH worse...  See your physician for the lab test for 25(OH)D, the serum level metabolite of vitamin D3...  I'll bet a Coke & Candy Bar your 25(OH)D results will come back < 30 ng/mL.

Take care,

V/R, Batch

UPDATE!!!!! so i have found a new Neurologist in Alexandria VA The Neurology & Headache Treatment Center  and he is Amazing. he spent over an hour with me just talking and listening and explaining everything. He has given me i think every medication for cluster headaches and i am now on Preventatives : topamax, and prednason(spelling) and When the CH start i have: Relpax, another pill triptan cannot remember the name, the nasal spray cant remember the name, and Sumavel dose pro For the ones the pill and nasal form will not work. i get 12 Sumavel dosepro shots a month he said without a doubt i have the worst CH he has ever seen based on how many i have && that without a doubt i have CH. all blood test, MRI's and Cat scans come back normal. so far i have tried the Relpax and the nasal spray. Both work great. I am so happy i fill like i actually will be getting my life back =)))) THANKS FOR ALL YOUR SUPPORT. YOU GUYS ARE THE BEST AND I WISH YOU ALL THE BEST AND YOU ARE ALL IN MY PRAYERS!

Do yourself a favor and get on Batch's Anti-inflammatory regimen (big doses of vitamin D3, fish oil, and mineral supplements). If you're like over 70% of us, you won't need all that other expensive stuff.

Lydia that is GREAT news. A neuro who knows his stuff and cares is worth their weight in gold, couldn't be happier for you! :)

Joe

Hey Lydia,

Brew gave you some good advice.  As I posted in this thread earlier, the odds are you have a vitamin D3 deficiency and that deficiency is making your cluster headaches more frequent and more painful.

The next time you see your neurologist or PCP, tell him you think you have a vitamin D3 deficiency and that you want the lab test for 25(OH)D, the serum level metabolite of vitamin D3.  Don't take "No" for an answer...

The coke and candy bar bet still stands that your serum 25(OH)D concentration will come back less than 30 ng/mL.  We've had CH'ers with active CH have their serum 25(OH)D concentration tested and the results have come back as high as 55 ng/mL.

Of the CH'ers who have gone pain free while taking the anti-inflammatory regimen with 10,000 IU/day vitamin D3 and then gone in for this test, all have had their results come back between 60 and 110 ng/mL.

At 20 cents a day, the anti-inflammatory regimen is far less expensive than any of the prescription CH preventatives, posts by CH'ers on this site indicate it's more effective than verapamil or any of the other preventatives and it has no significant adverse side effects.   On top of that...  It's a healthy regimen that's actually good for you.

You might want to have your daughter tested for a vitamin D3 deficiency as well...  I'll wager another coke and candy bar she's vitamin D3 deficient...

Take care,

V/R, Batch

>:( I'm here!...and how fricken annoying!  Me girl, me have, me chronic! Makes me wanna kick puppies and punch babies!....no seriously I am extremely offended for not only you and me but those thousands of women out there who are suffering because of that one stupid statement. I was told that women are rarely chronic...ok how the hell can any medical professional make that kind of judgement when so very little is known about the condition?!

To me that like telling a guy, there's no way you have breast cancer because You're not a girl...guess what NOT F'N TRUE!...sorry...i cant stand when someone suffers needlessly because of assumption or stupidity and it sounds like that was both...ugh!...

Lol ok I'm done being mad...

I am so glad you were able to find this forum and we can help you as much as possible. I hope my post helps you to realize that you aren't alone...there are a lot of us CCH's(chickclusterheads) out there.

Love and Gratitude! Stay PF my friends!

My Neurologist put me on Topamax now I have been on it for 3 weeks and 4 days im at 75mg right now when I am at full dosage he wants it to be 200mg but I like I said I have only been on for 3 week and 4 days and have lost 18lbs I am was not super heavy to begin with. I can’t eat I have no appetite a day I may (probably less) consume 500 calories and that’s me forcing myself then I feel extremely nauseous. I also am having a hard time sleeping because my body has then pins and needles sensation from the medicine. How long does it take for these side effects to subside?

Topramax is notorious for weight loss issues.  If you have lost that much already and you have not been on it a full month, you need to consult your neuro about another preventive.  A common preventive is Verapamil, it's normally one of the first prescribed.  Another common one is lithium. 

I would echo what a couple of people have already said and that is the Vitamin D3 regime.  It is not expensive and seems to benefit a number of CH sufferers.  Just something to think about.

My doctor said to give it till I see him on 06/28/2012. My PCP weighed me yesterday so my neuro is unaware of my weight loss. But I did call and tell them I was hardly able to eat and all the side effects I was having and they said just wait it out until I see them again on the 28th I guess give myself time to get use to it? He did not want to give me Verapamil because when I went to see him my blood pressure was low (because I had just got out of the hospital 2 hr prior and they had giving me narcotics) and I told him that but said he really did not want to risk it. But when I came back and saw him again he would check my blood pressure he would consider it if the Topamax was not working or I was not tolerating it well. So I guess I will just wait until the 28th or is that much weightless something I should call and inform him of?

Lydia, CAUTION, do not mix triptans within 24hrs. Can be deadly!!!!!!

I used Topamax during my last cycle, and at the suggestion of people here that use it. Take all or the majority in the evening to help avoid side effects. During 9/11 thru 2/12 I lost 28lbs. I'm a small guy.

On the Oxygen, if you've only used it at the Hospital, you were too late and probably not given the proper CH mask. With a bag @ 15LPM minimum. O2 or any other abortive must be used within minutes if not seconds.

Counting on any Doctor to know what is best for CH is a common mistake. CH is so rare, most Doctors have only heard of it and even "Specialists" are not up on the best treatments.

Knowing more than our Doctors is the best chance for proper treatment. You will find that knowledge here from people who know.

Fighting this beast is hard, days seem like weeks. The only way to speed up finding a good battle plan for you is for you to listen to the knowledge right here in front of you.

Knowledge is power against the beast.

Don

The side effects from the topamax are subsiding thank god. But my headaches are starting to come back a bit nothing like before keep in mind im a chronic sufferer and had an average of 15-20 days a month of CH's for 7 years before that it was more episodic. But in the last week I have had 3 headaches and now im scared the medicine is not going to work anymore = ( I am at 75mg and I think my final dosage is going to be 175mgs. I try not to have to take more then one triptain within 24 hours. thanks for the advice.