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pinogranny wrote on Nov 8^th, 2010 at 8:19am:

You really need to see a headache specialist and get a diagnosis.

                Potter

Hi, pinogranny.

At that level, I'd call them pretty fair shadows.  Especially if they're nagging and persistent.  Do you use oxygen to abort your headaches?  If so, you might try killing the shadows that way.  An energy drink with at least 1000 mg of taurine may be helpful.  I find that 8 mg. of the over-the-counter antihistamine, chlorpheneramine maleate along with regular aspirin can kill a persistent shadow--although in fairness, I have to say I haven't run into anyone else that this is helpful for.

It's difficult to justify dragging out the big guns to execute a lingering shadow, so I understand your frustration. 

The ice is a good trick, all right, but I have to say the tinkling fall of deciduous, frozen hair would distract me.   

pinogranny wrote on Nov 8^th, 2010 at 8:19am:


A high proportion of CH'rs smoke, but by no means all of them.  Some have never smoked.  Some started with CH long before they began smoking.

I'm relatively sure you can still fly if you could fly before the CH began.  CH has no known effect on the ability to fly.

Hope you'll consider posting in the "Getting to Know Ya" section below.  Most of us tend to monitor that area more closely, and you're liable to hear from more people.

Welcome, and all the best,

George

Quote:

Welcome to the board Cayce, have you had a chance to work with a headache specialist neurologist? There are a lot of effective treatments available, but HOW you use the meds is as important as what meds you use. Most of the prevents we use, lithium, verapamil, etc., take a couple of weeks to show a benefit, which is why it's critical to work with a headache specialist who understands how important it is to move slowly with the treatment plans. Imitrex injectables and nasal sprays are a fast, effective abort for many, the pills generally work too slowly for CH'ers.

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You didn't mention oxygen. 33 year sufferer here and NOTHING touches oxygen for speed, effectiveness, cost and lack of side effects. I feel the familiar tension and tingle start in my neck, ear and right eye, the pain starts, I start huffing oxygen, 6-8 minutes later I'm pain free. Please read the link and discuss it with your doc. Glad you found us, let's help you hurt a little bit less.

Joe

I suspect the blood pressure med your grandpa used was Verapamil, the most common first line preventative med used for CH. 02 requires a prescription from your doc, another reason to read the link as it has the wording the doc will need to use to get you the right set up. Some insurances cover it, some do not. If you have to cover all the costs, it's still dirt cheap. An E-Tank will cost you less then $5 a month to rent, the regulators can be rented for a couple bucks a month, or bought off of E-Bay for $20 or so. Refills on the E-Tanks run less then $15. I get 4-6 aborts per E-Tank so you can see it's not expensive. Its all available thru a med supply store, APRIA, LINDECARE, are just a couple of commonly used services.

Joe

Here is wishing ya all PAIN FREE DAYS,its been great to load up with knowledge,and to meet ya all.So i find i am not the only alien on this planet.
Take Care

Should have told ya. I get three to four attacks per day. Four years ago was not as bad as this go around. I am open to anything that will help. I am on Verapamil and Imatrek 100mg Have found that taking Imatrex and 600mg of ibuprofin with a energy drink knocks it out quick. Thought just energy drink was going to break cycle as I went two and half days with out headache, but came back last night.   I am taking one fever few tablet each morning with verapamil.  The energy drink did or does seem to help. But hoping that I am getting to the end of this cycle.
But still hoping to learn as much as I can.. Thanks

Hello to all the cluster warriors out there.  I have been suffering from these for the last 7 years and have been thrown every pain drug in the book at me to no avail (as we all know), and just got an attack while on vacation in Europe. Let me tell you, CH+youth hostels in Amsterdam is a HORRIBLE experience. I saw two dutch doctors and was prescribed imigran pills. These did not act quickly enough to do any good. When I got to Berlin, by some miracle (and a very good friends help) I managed to find a pain specialist.  For the first time in 7 years I felt like I was talking to someone who truly understood this condition thoroughly.  He immediately prescribed me imigran nasal spray as well as prescribed some injections in case of emergency.  I was switched from propranylol to verapamil, and he was horrified when I told him about the meds I had been prescribed in the past 7 years.  He said that here in Germany doctors can be taken to court for prescribing sumatriptan pills to CH sufferers, because they are not fast acting enough to cause any relief, and thus cause unnecessary pain and suffering to the patient. Here they consider CH as a medical emergency as serious as a patient having a heart attack. I have been researching this condition more and more and I had never realized how rare it was, which is why so few doctors know how to treat it properly.  I feel like I have gained much more knowledge about this condition now and am equipped with the correct meds to battle it in the future. 
That said, I am concerned about going to back home to Toronto in a few weeks and trying to find a specialist who will take this condition seriously and prescribe me the correct medication. I had never even heard mention of sumatriptan, or verapamil until I came on this trip, and I have been to several GPs, and had never even been referred to a neurologist.  I thought I would join this forum today because I think that having the support of people that really and truly understand what it is like to live with CH will be very important to me in the long term. 

question. Because this condition can and is often taken as drug seeking behaviour or misdiagnosed, are there medic alert bracelets or some kind of documentation that we are able to get to identify ourselves as having this very rare condition?

im so thankful to find this tonight, i havent been thinking properly for a long time. iv gotten strength from reading all your stuff. today has been by far the worst day of my life. CH non stop...they never fully went away only for them to come back...im scared to go to bed tonight and bad thoughts are always creeping ...i feel very claustophobic at the moment and im tired...iv slept like 20 hours this week...i literally feel like iv hit rock bottom...im in my fourth year now with CH, but only got diagnosed this year...they always used to tell me migraine, im getting panic attacks just thinking a bad spell will hit me again...i generally have like 2 a day, but today one just didnt go away...i feel lifeless and pathetic.
everything irritates me...noise, light, thinking, speaking, friends trying to support me...and i feel bad.

but reading your stuff made feel a bit stronger, like "I can do it".... and i need to find patience

the only thing that sometimes works for me, as non of the meds do...is an extrememly hot shower to the point i feel like passing out...which generally happens when i get out and lie on the bed. is this good or bad?

Welcome to the board Zane. What part of the world do you hail from? WE need to get you to a doc who knows how to treat these things. Just riding them out with hot showers is unacceptable!

Joe

Welcome to the board Eric. The paion killers tell me your doc is NOT up to date on the treatment of CH. Short of knocking you out, pain killers just won't help with CH.

FIRST and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

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It’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 30 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

So all that follows will be worthless I hope……….but still…treating CH is a bit more complex then taking a pill to get rid of your headache. It takes an organized approach, I used a 3 prong approach in the past, haven't needed it since starting the D-3 regimen above.....many have had success using 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. You mentioned verapamil, we tend to take it at doses much higher then most docs are used to. Some have to go as high as 960 mg a day to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. 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? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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This link will show you how to get set up with welding 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.


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.

Joe