I have been suffering from CH for about 7 years nows. I didn't know what was happening for 4 years until an ER Dr told me I had CH. Now 3 yrs later I have my first Dr appointment. Any advice on what to expect what to tell them anything really. I have anxiety as well and the anticipation is not doing good things for me. Thanknyou

My suggestion would be to write all your questions on a piece of paper beforehand and take it with you along with another piece paper for answers.

As to the questions, I'd start by finding out how much the doctor knows about CH and how much experience he's had with treating it.

As to your anxiety worries, we're here for you all the way because we care.

All the best and keep us informed,

Brian down under.

Hi Jatimom

I'd echo Brian's suggestion. Write down what you'd like to ask and tick off the questions as you get the answers, taking notes.

Also before the meeting write up notes about what you'd like to tell him about your headaches with details about when they happen, what seems to trigger them, what happens during a headache, what it feels like, how often and anything else you think might help.

Hope all goes well and let us know how you get on.

Don't feel anxious about your appointment.  this is your first step towards getting some proper help.

Tell them everything about your symptoms and how you feel afterwards, and ask every question you can think of.  No question is too silly.

You may find it complicated and a bit overwhelming, but we can help with clear explanations, and we are always here.

Thank you all. Man I feel a wonderful to not be alone in this battle. Thank you so much I'm sure I'll being asking lots of ?? In the future

Jatimom,

You have good advice from Maz, Mike and Brian.

You didn’t say when you’re appointment is.

If it has taken place, please let us know how it went.

Best wishes,

Peter.

I am so sorry I have not updated but I'm not exactly sure how it went. I went on Tuesday she told me to stop taking my excedrine migraine cause the caffeine does nothing for clusters and back off marijuana. (I know I know pot bad bad blah blah blah but when you go 7 years no help you get desperate) Anyways she started me on 80 mg Verapamil and then 2 days later the devil came to visit and he was meanier than he has ever been. Went to the ER Saturday they gave me a mess of stuff in an IV with oxygen and sent me home with Fioricet and it didn't help my head and made ilmy asthma horrible. So now I'm back on caffeine and pot but feel morally wrong cause I'm technically going against what my Dr told me. I'm starting to get scared very scared of the process.

Redbull and other energy drinks do help with CH, with this being thought to be due to the combination of caffeine and taurine. Have you tried any? Drink it very rapidly at the start of a CH.

Marijuana seems to have had research that says it can help and other research that says the opposite, with this being reflected by what people have posted here over the years. I'd keep a headache diary and see how using it / not using it impacts your CH so you can find out what works best for you.

80mg of verapamil is a very low dose with most people tending to need 240-360mg a day and some to around 1000mg a day. It also takes about 7-10 days to take effect, so not an instant change.

Remember it can take time for changes in medication to take effect, which is never an easy thing to work through (we've all been there and experienced good / bad outcomes). But you need to work through things with your doctor. And if they don't help, work with someone else until something does.

Thank you for that. I am needing some reassurances. And I do chug a red bull when my head begans. We keep stock piles of that stuff around my house. That was one of the things my Dr told me to give up

Jatimom wrote on Dec 26^th, 2018 at 8:05am:

And I do chug a red bull when my head begans. We keep stock piles of that stuff around my house. That was one of the things my Dr told me to give up

Just explain to your doctor that Red Bull contains taurine, which is a calcium channel antagonist (just like verapamil and multiple other CH preventives) plus caffeine which is a vasoconstrictor (just like oxygen and the triptans which are CH abortives), with the delivery medium being carbonated to increase the rate that the two active ingredients are absorbed into the blood.

I've had this discussion with neurologists / headache specialists and they see that there is a rationale behind using them.

UPDATE:::: I don't even know why I wanted to start seeing Dr for my CH. I got more help from the ER. I saw a 2nd Dr today and apparently if I start to eat right exercise and lay off the pot I will be completely healed. He will NOT give me anything for the pain cause I just need to live a healthy life. And if I don't I won't see my baby's 18 birthday. And as far as how painful and debilitating this disorder is is all in my head I make it that bad if I change my thinking it won't be more than a little annoying. Then he wrote me a prescription that is illegal to dispense the way he ordered. I'm at hopeless again and give up. I know I just started this but I'm loosing all hope and drive.

Jatimom, I can promise we understand the frustration and exasperation you can feel when dealing with doctors who have so little idea about the devastation of Cluster Headaches.

Doctor-shopping is one possible alternative hoping to find one who knows what they're talking about or perhaps seeking a referral to a neurologist,  preferably one who is also a headache specialist.

As if CH isn't bad enough we are constantly faced with almost animosity from poorly-trained doctors who think they know it all.

Keep fighting,  darlin'  and we're all on your side.

If only it was as simple as no pot and being healthy with plenty of exercise. We've a long time poster here who is in one of the elite units in the army. I suspect that he will be healthier and do more exercise than 99% of people, but he has CH.

The doctor who said they wouldn't give you anything for the pain is actually doing the right thing. Nothing in the line of pain killers will really touch CH pain. However this hasn't stopped many doctors prescribing strong narcotic pain killers which often just results in problems like dependency and horrible withdrawal symptoms (I've personal experience of this).

Treating CH is the combination of an effective preventive to cut down how many CHs you get plus abortives to kill off any CHs that break through.

For preventives, drugs like verapamil, lithium and topamax can work well, although what works wonders for me and 80%+ of people who use it is using vitamin D3, which was put together by Batch who is a regular poster here. Read up about it at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. It has kept me CH pain free for just short of 6 years, making a difference when I was about to turn chronic.

When you get a CH, two effective abortives are oxygen (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) and sumatriptan (also known as imitrex / imigran) injections / nasal spray. They can kill off a CH in a few minutes, far quicker than any pain medication can take effect.

CH isn't at all fun, but the two approaches do make a difference, taking back control of your life.

Keep reading, keep asking questions, we all know what it is like to go through CH, not just the pain but doctors without knowledge, invalid treatments and the impacts on our lives.

Ok you guys are my lifesaver as far as hope. Thank you all for being so helpful. Mike I don't want pain pills or narcotics. I'm a recovering addict from that kind of stuff for 11 years and scared senseless of getting addicted again. I'm having a hard time getting the abortives. This group of drs says that stuff doesn't work for my "lifestyle" and will cause a addiction. They are saying they ate not allowed to prescribe O2 unless there is a history of low O2 saturation and they won't even entertain the idea of looking into it.ive tried showing them the studies but their medical book on their cell phone doesn't show any of it and they can NOT support trial and error from non-medical personnel.

Looking at PubMed (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) which is a great source for medical research, there isn't too much around linking sumatriptan to addiction, but what I found indicates at most a low potential for addiction:

• START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE study suggests that sumatriptan has a low abuse potential.[/quote]
  
• START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE, neither tachyphylaxis nor addiction were observed.[/quote]
  

I don't know the rest of your medical history, but based on this published research there is a limited risk relating to addiction.

As for not being able to get oxygen prescribed for CH, this is crazy. PubMed (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) has over 200 published research articles on this topic and it is used worldwide for aborting CH. People have posted on the forums here about getting it in multiple countries around the world, including the US.

What some people have done who have been unable to get medical oxygen is to use welding oxygen which has enabled them to abort their CHs.

As for doctors not wanting to look into something like this shows they have a closed mind. That attitude has no place in medicine.

Tell them to look at PubMed and not their medical textbook (I wonder how old it is).


Jatimom wrote on Dec 28^th, 2018 at 8:42am:

they can NOT support trial and error from non-medical personnel.

Of course, if you're not a Dr you can't know anything (yeah right...).

Sometimes you wish that some of these doctors would experience just a single Kipp 10 CH and you'd be able to give them the option of doing nothing or using oxygen as an abortive. I wonder if any would or even could just ride it out?

Change doctors until you find someone who has the right experience and knowledge of CH to get the treatment you need. There are some great doctors out there, it is just a matter of finding them.

Where are you in the world? By giving a country / state, there may be someone local to you who can give a good recommendation for someone nearby.

In the meantime, I'd really strongly suggest you look at vitamin D3 (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) as this works really well for 80%+ people who use it.

Thank you Mike I am from Amarillo tx or canyon tx depends on how you look at it. I wish half these Dr could feel half the pain. I wish my family could to. But I appreciate all you have done to help me. I have been reading on the D3 regimine i havhave to send my other half to go find the meds for me. I'm not even attempting to leave the house with my daughter and go through a very active cluster

I'm not sure of the policy here regarding helping each other through sharing, but I have an abundance of abortives, that I would be willing to send you free of charge. Can someone speak to how this is viewed here?

JimmieDad1 wrote on Jan 26^th, 2019 at 2:25pm:

I'm not sure of the policy here regarding helping each other through sharing, but I have an abundance of abortives, that I would be willing to send you free of charge. Can someone speak to how this is viewed here?

….well...can't help ya there....we wouldn't want anyone to think we would advocate sharing prescription meds...gives some folks the squiggles...heavens!

...but so happens, we are a gregarious bunch... frequently visiting and occasionally a distracted member accidently leaves an abortive or two at your house...

...we all recognize that this could be a problem....so ya mention in a general post (no names, wouldn't want to out a forgetful clusterhead  :-X)  that a visitor left some Imi or somesuch behind...and should contact you by PM, of course, soes they could get it back...if it might be theirs, that is....

best

jon

LOL, Jon. I have missed your sense of humor. Don't get around these pages nearly enough anymore.

Jatimom, you have been given great advice on here. I'm glad you are aware of the problem of addiction to narcs/opiates. Been there, Done that, all at the doctor's behest many years ago when nobody knew anything about CH. All my doc knew was, if you are in pain, take a pain pill. I got hooked, realized it, and took myself off cold-turkey. Worst three months of my life. When on the pills, I still hurt. If I took enough pills, I just didn't care. Not the way I want to live or want anyone else too. Pain meds just don't reach the right receptors for CH.

You need new doctors. You need a headache specialist, and there aren't that many of them. The advice you've been given is the exact opposite of what so many of us have learned over the years of dealing with the beast. I fully believe there is more CH knowledge available on this site than in all of the medical libraries in the world.

The Vit D regimen referenced by Mike really works for a tremendous lot of us. The only side effects I've gotten from it is good health overall. No colds or flu in several years. I'm a chronic clusterhead for whom no medications have worked. The only three things I can count on (legally) are the Vit D3 regimen, oxygen, and energy drinks. Vit D has given me approximately 80% reduction in both numbers and severity of attacks, as in going from 5-8 attacks in the Kip 5-8 range/day (low cycle) to 8-12 attacks in the Kip 7-9 range/day during high cycle to now I get 1-3 attacks in the Kip 4-6 range/day with most of them in the Kip 4 area. I abort these with an energy drink and don't even slow down my life most of the time.

The idiot, I mean doctor, who told you he cannot prescribe oxygen unless you have a low sat should be reported for malpractice. This is not proper medicine, and he is well over 20 years behind in medicine.

Do some reading in the links you've been given. Also, spend some time in the Meds and Treatments pages. Some time when you've some time to spend, click on the archives button and go back to the early years around here and read some of the stuff we tried.  :D Some of it is funny, some not so much. Sometimes I miss those days. Made some really great friends here that I don't hang out with as much as I ought any more.

Do check out the Oxygen Info button on the left. There is some great info available to you there. If you can't get your idiot, I mean doctor, to prescribe it for you, go to Harbor Freight (or their website) and order a cheap welding O2 regulator and buy your own tank and mask. It will change your life.