My name is Jennifer, I'm from Ontario, and was just diagnosed with having cluster headaches.  My problem is they are every day, with zero relief.  My neurologist has called them Chronic, and told me there is little that can be done to help.
At first he put me on anti-inflamatories, then put me on blood pressure medication to lower my blood pressure (my last reading was 90/60 which is low to start with), needless to say none of this is helping.  I feel incredibly dizzy when I take my meds, and it seems to make things worse.  I mean on top of feeling like I'm being stabbed in the eye constantly, and having to deal with the worst pain I have ever endured, I now feel dizzy, and tired, and almost lifeless.

I am the single mom of 2 kids, my son is 14, my daughter is 13.  I have been with my boyfriend for just over a year, and in my opinion, nobody understands.  I think if I hear "i wish I could help" one more time, I'm going to stab someone in the jaw....LOL.

I have not had these long, in fact, I woke up on June 4th, screaming in pain.  I had never ever experienced such pain before.  My pain has not stopped....not even for a day.  I have had the normal CT's and MRI's, which of course show nothing, had all kinds of blood work, therapy meetings, you name it, i've been there.

I need some form of relief, I need to know what if anything will give me a break, even if for 5 minutes....my neurologist, wants me to take these blood pressure meds for another 2 months, doubling my dosage, before he sees me again....seriously, I've come to my end.  I had my kids both natural births, both labours lasting upwards of 33 hours, and it was easier then this!!

Does anyone have any suggestions?  I've done a lot of research online, and I'm not fully understanding the medication my dr has put  me on, when there seems to be other things that work better??

I appreicate everyone's support here, this is the first place, I have ever seen anything like this.

Jenn

Welcome Jennifer!

Are you on Oxygen???  Check out the Oxygen link to the left.  Print out that info. and give it to your Doc.  Also Print out the page this link START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE will take you to and give it to your Doc as well.  This may help your doc help you.

What else did he give you for an abortive?

Here are a few over the counter helpers:

4-Way Nasal spray or Dristan 12 Hour Nasal Spray helps with the annoying congestion. 
** Note ** Do not use this more than 3 days in a row!!  It can cause severe sinus problems.

Taurine and Caffeine drinks (RedBull if you like it) to help prevent a hit when you feel one starting.

Melatonin or an Allergy (Zyrtec aka cetirizine works for me) pill at night before bed to help avoid night time hits.

The herb Kudzu has helped a few as a prevent.   

Deep breathing through the milder hits can help too.

Hot/Cold Compresses Depending on your preference can help as well.

Sending Pain Free Vibes your way!

The only other thing he has given me is 6 pills of Imitrex.  Other then that, he said he wants me to just take the blood pressure stuff for the next 2 months and see where we are at.

I'll print off that stuff for sure to give to him.  I am willing to take all the help I can get

Thank you for the suggestions :).

Pills don't work for CH at least not as fast as we need them too.  He should have you on the Imitrex injections at least!!

You are welcome for the suggestions, I hope they help.

I'm a little concerned with your desciption, are you in a constant state of pain? Or are you suffering from several attacks a day with pain free times in between? Do they wake you after you have fallen asleep?The good news is we don't call you chronic until you've gone 12 months without any real remission, so a little early to make that call.

Are you seeing a headache specialist neuro? Doctors get about 4 hours total in med school, on ALL types of headache. So without going to a specialist you're risking a mis-diagnosis resulting in  alot more suffering before you find relief.

Sure helping we can help you find relief, headache pain sucks. :'(

Joe

I have several attacks a day, very little relief time. I'm seeing a neurologist, not a headache specialist, I dont think we have those here in Ontario.
A lot of nights I am woken by the pain, I get up and usually pace around, sit outside and take deep breathes, trying to find some sort of relief.
I've always suffered from what they thought to be migraines, from when I was a young teenager, my neurologist feels that this was the begining of the cluster headaches, and that they have gotten worse over time.  He has just recently diagnosed me, its not that I've only had pain for 6 months.  All of my previous doctors always told me I was simply a migraine sufferer, even though these "migraines" would come on repeatedly throught out a day, repeated times a week, then suddenly disappear for weeks/months, only to reappear.  This is what has caused my dr to say I have CH.

Sounds like your doc might be right, just make sure he does proper testing on you CT scan and or MRI to make sure it's not something more serious would be in order.

I've already had the CT Scan and MRI done, a few times, they kept thinking they were missing something.  I've also had all kinds of bloodwork done, and they even sent me to therapy thinking it was stress, but the therapist felt I had no more stress then an average person, other then my head feeling like it was going to explode :)
I'm happy I've finally been diagnosed, I'm just wanting to get relief, and its hard when the meds are just starting out, and they are in the "testing" phase to see what works and what doesn't.
As you all know, we all just want a quick fix, and there isn't one.  I'm trying to manage, but its hard, I have nights where I dread going to sleep because I know full well I'll be up in pain shortly. 

That's good sounds like you have a good start at least...now for the hellish med dosing game, I wish you much luck for a quick good dosage that works for you soon!

Next time you see your doc or for that matter give him a call and ask for the imitrex shots.  As I said earlier the pills take too long to work for a CH'er.

Yeah, that description does sound a lot more like CH. There is a LOT you can do for CH, I've had them for 32 years and managed a 30 year career in law enforcement, a 28 year marriage...( so far ;)) and raised 2 beautiful daughters to adulthood. Takes some work on your part to educate yourself, and some work to educate your doctor. You have a couple of options, look at clusterbusters.com      they look at some "alternate" ways to treat CH, out of mainstream medicine. Their success rates are pretty impressive. Then there is the traditional medical regimen, which I chose...mostly because as a cop the other was not really an option!

A 2 pronged approach is what has worked best for me:

1: A good preventative medication, a med you take daily to reduce the number and intensity of your attacks, that's probably what your doc is attempting with the BP med, is it verapamil by chance? If so, most CH'ers go to a much higher dose then doc's are used to, to get relief. Some go as high as 960 mg a day to get relief. I use lithium when I'm on cycle, at 1200 mg a day it blocks 60-70% of my hits. Topomax also has a loyal following although many refer to it as dopey-max because of it's side effects, it can make you a little loopy.

2: An abortive regimen: the attack has started, now what? Read the oxygen info tab on the left side of the board. I can abort an attack, be completely pain free, in as little as 6-8 minutes using oxygen. It MUST be your first line abortive. DEMAND it from your doc, print out the info from the board and give it to your doc. It's cheap, effective, and no side effects.

Imitrex injectables work as fast as 02 does for me, bit it's expensive, I hate how it makes me feel, and I believe it may extend cycles. That being said I still use it when I get caught away from my oxygen. Imitrex nasal spray works for many, the pills take too long to absorb to work for most.

Energy drinks, rock star etc., any containing the combo of caffeine and taurine, chugged at the first sign of an attack they will abort or reduce an attack for many. If you are taking verapamil, limit the energy drinks, they interact badly with verapamil.

Start the following vitamin regimen: Calcium Citrate with VitaminD, Magnesium and Zinc, washed down with lemonade, up to 4X a day. Alters your arterial PH making you less succeptible to attacks.

None of these are "cures," all are part of a comprehensive attack on the beast to lessen the number and intensity of your attacks, and give you weapons for when the beast breaks thru.

Joe

Hey Jenn,

It looks like you've been given some great advice already.  Just wanted to jump in and say Hi and Welcome!  Glad you found us.

Take care,

Kate

Thank you everyone for all of your amazing advice and support!!  I am so happy that I found this site, it makes me feel so much better, knowing that I'm not alone in this battle.

I am going to print off some of this information and take it to my doctor, hopefully it will help him (and me for that matter).

I hope you all have a great weekend....I'm off to cheer for my sons hockey team in the Silverstick tournament

Joe, I feel like such a twit, I didn't answer your question!!!  I am on Verapamil, we started off with 180mg a day, then increased it to 360mg a day.  Problem is my blood pressure is really low, in fact my doctors exact words were "you have the blood pressure of a 70 year old, we have to go really slow with the doses, be careful though, even this amount could make you pass out, so be prepared"  yup, I feel safe...LOL.
He is going to increase it again when I go back in January, but says he can't increase it too much simply because of how low my pressure is. 
Apparently my low blood pressure is cause for alarm with a lot of medications, he is afraid to put me on too much, not knowing how it will affect me.
Hopefully after this hockey tournament, I'll be able to get in to see him, and get some more help with all the advice you guys have given me!!

Sounds like he knows a bit about it, thats really good news. Some have found when verapamil alone didn't wor, combining it with lithium brought them relief. Good luck, it's roughest at the start. :'(

Joe

So your doctor put you on anti-inflammatories and said there's little that can be done to help. Sorry, but this idiot is really doing you wrong big time (sadly most rank and file neurologists are in this category of "ignorant bozo" when it comes to CH).

There is so much that can be done to help, as Giussepi/Joe started outlining above. I've learned about the effective treatments and how to optimize them here, and it has revolutionized my experience.

Joe is a 30+ year CH'er who has learned how to gain tremendous relief, as am I, so at least you have folks like us when your doctor miserably fails you.  8-)


tink1974 wrote on Nov 24^th, 2010 at 9:28pm:

As you all know, we all just want a quick fix, and there isn't one.

Please let go of that one immediately. I  think you'll be pleased to find out that in most cases it simply isn't true. If 5 - 10 minutes is quick enough for you, that's about how long it takes many O2 and/or imitrex injection users to be pain free when we catch an attack at the onset.

O2 use as outlined in the oxygen info link to the left is widely heralded here for good reason. Imitrex is more controversial. Some believe it can extend cycles. Personally I have used O2 as my first line abortive with imitrex as a backup and been able to abort every single attack in a 2.5 month episode. I don't feel any side effects at all from imitrex.

Please keep in mind that many of us just get our O2 from a local welding supply place if we don't have a prescription for O2 (welding O2 is the same as medical O2). Maybe your boyfriend could help you out by picking up an M tank for you?

I've only talked about abortives, but there are powerful natural preventatives too that don't cause dangerous blood pressure issues.

I bet you do have headache specialists in Ontario. It would be nice if they didn't engage in the criminally negligent activity of making CH patients wait months for an appointment as is standard practice down here.

Welcome.. Sounds like you get hit hard a night.I too was affraid to go to sleep at night. Until I tried Melatonin,you can buy it over the counter at any drug store. I take 10mg about an hour before bed and after three nights I have yet to get hit at night(3 months) Give it a try well worth the 8 bucks for 60 tablets. I also have chased away many HA's with chuging a red bull drink at the first sign of an attack.
Read the oxygen info link at the left..

Good Luck,and wishing you some relief soon.

Thank you all, I really do appreciate all of your help and support!!!!
I am going to see if I can get my hands on some O2, and speak to my doctor about the injections, as well as trying some of these other methods you have all suggested. 
I'll also look into the headache specialists, I'm only seeing a neuro right now, who I was told would be the best person to handle me, but it would appear there are better people out there.

Has anyone tried Acupuncture?  Does this work at all??

Accupuncture and chirporactic fixes are helpful for the secondary issues of CH. The tight neck muscles, the damage we do to our back, neck, and shoulders while fighting against an attack. They don't seem to do anything for the actual CH mechanism.

Joe

tink1974 wrote on Nov 28^th, 2010 at 10:29pm:

Has anyone tried Acupuncture?

Yep.


tink1974 wrote on Nov 28^th, 2010 at 10:29pm:

Does this work at all??

Sorry, but nope.  :'(

Thanks, I was thinking of giving it a try, but its not covered by my insurance, and it costs a fortune, didn't want to waste my money on it.

Several on the board have gone to acupunctureists as they claimed to be able to "cure" CH, no success stories on that front yet.  :'(

Joe