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        New Message Board Archives >> Jul-Sep 2003 >> No help from dr
        
(Message started by: JosieJay on Jul 17^th, 2003, 4:26pm)

Title: No help from dr
Post by JosieJay on Jul 17^th, 2003, 4:26pm

I've suffered from ch for 6 years.I am 23 and have had them since I was 17.My doctor told me they were migraines and gave me painkillers but then I did a cluster quiz and I'm 99.9% sure that they are ch.I've tried talking to my Dr but he just keep's palming me off with painkillers.I always come out of the Dr crying because he isn't helping me,I've even had a ch in his office and he told me to go to the dentist and have my eyes checked.When i have a ch i can't even cry(as much as i want to)because they are so intense.What am I suppose to do when my own Dr won't even help me I feel I'm going mad!!! Thanx just wanted to get it off my chest xx

Title: Re: No help from dr
Post by Big_Dan on Jul 17^th, 2003, 4:28pm

... let me know who he is so I can bash 'im real good. >:( >:( >:(

THEN, find a NUEROLOGIST (sp). They'll know more about CH than a regular doc. Some neuros will, not all. Just search far and wide, sometimes you'll have to go pretty far out of your way to get what you need, but it's well worth it.

-Big Dan

Title: Re: No help from dr
Post by Big_Dan on Jul 17^th, 2003, 4:30pm

on 07/17/03 at 16:26:09, JosieJay wrote:

...and he told me to go to the dentist and have my eyes checked.

That should throw off MAJOR alarms too, btw.

-Big Dan

Title: Re: No help from dr
Post by Danielle on Jul 17^th, 2003, 4:32pm

I strongly suggest you get a second opinion! You are a consumer and your Physician works for you....you have the right to seek counsel from elsewhere if you are not satisfied....

It's bad enough to be in pain...don't suffer any more than neccessary

Title: Re: No help from dr
Post by Mark C on Jul 17^th, 2003, 4:44pm

Get a Neurologist....your current Dr. sounds like....well, lets just says "un-pleasant"!. Look here (http://www.clusterheadaches.org/doctors.htm) for a list of CH knowledgeable doctors....hopefully one in your area.

PFDAN's
Mark

Title: Re: No help from dr
Post by cbolony on Jul 17^th, 2003, 4:46pm

Like Big Dan said find another neuro i'm on my third and he is the one i been looking for.He help me more in two visits then the other two did in a year

Title: Re: No help from dr
Post by Charlie on Jul 17^th, 2003, 4:46pm

Where did this "Doctor" get his credentials? Even an all Caribbean educated MD should do better than this. :o

Stick around. You'll find good ideas and support here. This is a thing that worked well for me:

Dr. Wright's Circulatory Technique

This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.

When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.

This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.

I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.

This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.

When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.

I wish you the best of luck - Charlie Strand

Title: Re: No help from dr
Post by JosieJay on Jul 17^th, 2003, 4:55pm

Thanks everyone! It's quite hard to get to see a specialist where I live because you have to go through your own dr to see one(in the UK wales)My current dr just makes me feel like I'm wasting his time.After i did what he asked(see dentist and eyes checked)he still palmed me off with migraine tablets.But I think enough is enough and I'm going to change dr's,but like the man said in the uk post they hate giving you expensive medication over here.

Title: Re: No help from dr
Post by Opus on Jul 17^th, 2003, 5:30pm

Josie,
There is one supporter here from UK and there was one sufferer, I'm sure there are a lot more, I have heard that it is hard to change docs there but it is possible, the sufferer is doing much better this cycle becouse her doctor got her O2 and imgraine (Imiterex) which is a big help, If you want to we can see if Cathy can help or she may pop in anyway,
Hope you have PFDAN soon.

Opus/Paul

Title: Re: No help from dr
Post by Hooter on Jul 17^th, 2003, 6:21pm

Hi Josie, (Hi Opus, that "Uk sufferer" here.)

Good advice above but a couple of add ons.

You can change your GP or educate the one you have. My GP started out useless, but was eventually ready to listen and is now very supportive. It may be worth pressurising them politely to refer you to a neurologist (though you will have to wait for an appointment)
The good news is that if they take the time to refer to their standard reference book that all GP's have (can't remember the name of it but they all have one) it now has cluster headaches and the main treatments in it. This is only recent.

It is well worth logging onto OUCH UK and posting there, one of the OUCh trustees lives in Wales and there are quite a few sufferers there too. They can probably help with local knowledge.

If this all fails, it is possible to see a neurologist privately. One consultation would probably cost in the region of £150, so it would be best to get a recommendation from another sufferer. My neuro was fantastic but is in Bucks I'm afraid. There is also I believe a possibility that you can self refer to Queen's Square (see UK site for what this is) if you are really coming up against a brick wall. Other Uk people will know more about this than me.

The OUCH UK site is also a mine of useful information, but if you want to talk, message me and I will send you my email address to see if I can help further.

Hooter

Title: Re: No help from dr
Post by Big_Dan on Jul 17^th, 2003, 7:02pm

Like Hooter said, you may have to wait for a Neuro appointment...

... but if you tell them its an emergency situation, then you're likely to get in sooner.

... I've gotten in the same day I've called... in the past.

-Big Dan

Title: HiRe: No help from dr
Post by Simon on Jul 17^th, 2003, 7:38pm

Hi Josie,

Your doctor sounds like a shit to me. Being able to watch anyone shadowing, let alone having a full ch attack is inhuman.

Best tips are to print off the article by Peter Goadsby linked here: http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498&Section=Feature and give to your doctor.

Being immodest for a moment, you might try this: http://www.clusterheadaches.org.uk/clusters/txt_note_colleagues.cfm It's a clearer version of the piece I wrote a while back which may be helpful to you and yours.

ATB
Simon

Title: Re: No help from dr
Post by ave on Jul 17^th, 2003, 7:54pm

Hey Simon, good to see you posting again (even ig you seem to have started in the middle of one of the wwars).

Are you well? Give my regards to Carol.

Title: Re: No help from dr
Post by don on Jul 17^th, 2003, 9:06pm

Josie follow Simons advice.

He probably knows the CH circus in the UK better than anyone here and for God's sake fire that Doc. or bombard him with CH info from this site and all the OUCH sites.

Title: Re: No help from dr
Post by Brian_Y on Jul 18^th, 2003, 1:51pm

Go find another doctor.

And when the NEW doc helps you, go by the old doc's office and break his fucking face. He'll look up something in a text book next time. Asshat.

Title: Re: No help from dr
Post by Opus on Jul 18^th, 2003, 7:04pm

Josie,
How are you doing?

Hooter,
I knew you could help, Good to see you :D

Opus/Paul

Title: Re: No help from dr
Post by Tessa on Jul 19^th, 2003, 9:05am

Oh man, I was so in your shoes a few years ago! Someone on this site sent me a link to some people who call themselves the pain angels. If anyone knows the link, PLEASE GIVE IT TO THIS PERSON! I filled out a form and they sent me a list of doc's in my area that were knowlegable of cluster's. I picked one, and even though he knows less about CH's than I do, He gives me what I need to get through a cycle, which I couldn't get crap out of the other idiots I had seen! He gives me imitrex, O2, and pain med's, as much as I need to get me through. I have seen dozen's of neurologist's over the past 15 years and even went to the Henry Ford Headache Trauma Center in Detroit in 1996,( they were the ones to give me a correct diagnosis), for 9 years no one in East TN could even do that! Find another Doc! And don't let them push you around! Educate yourself and be assertive! Find out what works best for you and demand treatment. I have learned over the years you have to be a little pushy. These doc's need to remember their oath, do no harm. So many times I would have given up my first born to see a doc struck down with a cluster headache, and when they drop to their knees in agony I would smugly inform them, yes, that is what it feels like, after I kick them in the balls!
One other bit of info. I don't know where you live, but I heard about a Doc in Nashville, TN that actually has cluster's and is very effective in treating them. I though about taking the 4 hour drive over myself. If interested, I can try to find the name for you.

Title: Re: No help from dr
Post by Hooter on Jul 19^th, 2003, 7:02pm

Josie lives in Wales which is why all the UK people have posted to try and help.

How are things Josie?

Hooter

Title: Re: No help from dr
Post by cathy on Jul 19^th, 2003, 7:08pm

Hi Josie...the UK supporter here...you've got some good advice here, we went to see a neurologist privately, your doctor cannot refuse you, but does have to refer you, cost £130 good luck and keep us posted.

Cathy :)

Title: Re: No help from dr
Post by Headacheboy on Jul 19^th, 2003, 11:51pm

There is a new surgery that works! I know this for a fact. I had this surgery in April and June. My chronic clusters are 98% gone. I had this surgery at UCLA in Los Angeles Ca. If you can't get to Ca. try O2 for 15-20 minutes at setting 7. Good Luck

Title: Re: No help from dr
Post by Hooter on Jul 20^th, 2003, 2:40am

Sorry, have to disagree completely Headache Boy. I am very glad surgery has worked for you (would be interesting to know what surgery) but this is not a first resort and seems an extreme thing to be recommending to sufferers here where you do not know what has been tried. Certainly in the UK, a procedure of any kind currently would not be recommended unless the condition was chronic and intractable (i.e. all the abortive and preventives are failing) Even if it were recommended, which seems unlikely, I would suspect that someone from Wales would wish to explore other avenues before paying to fly thousands of miles to have surgery which would have no guarantee of success, and may (depending on what it is) be risky.

Accurate diagnosis comes first, preferably from a neurologist who is familiar with the different treatments available, there may be a simple treatment that can then resolve whatever headache condition it is.

Here 02 is recommended at a higher flow rate than you suggest. Most sufferers use at least 9+litres per minute at the onset, and some use higher than this- up to 15 litres a minute for the first few minutes. Certainly for me 7 litres per minute is too slow for me to get rid of the highest level pain

Hooter

Title: Re: No help from dr
Post by JosieJay on Jul 20^th, 2003, 1:39pm

thank u every1 for your help,you've all been great. I have made an appointment with my dr and if he don't do nothing this time I'm gonna have to get tough. >:(
It's nice to come on here and know your not alone with the pain,because no-one in my family or my friends know exectly what the pain is like. I'll keep you posted at what the dr says.

Title: Re: No help from dr
Post by Hooter on Jul 20^th, 2003, 2:28pm

Good luck Josie!

Be polite but rock firm and as resolute as you can manage. When they turn away as if to say "Consultation over", if you haven't got what you need to help you, take a deep breath and stay put and keep going-they'll get the message that you won't be fobbed off.

Let us know how it goes, you WILL get there in the end.

Hooter

P.S. Not sure if you have had time to do all the reading you need but usually, the main abortives prescribed in the UK are High Flow rate 02 (you need to be very careful it is the right equipment first and Imigran (a nasal or injectible Triptan- pills are too slow)
The main preventive is Verapimil but there are others (be careful they are not giving you migraine preventives though e.g. Pizotifen or other anti-histamines as these often don't work and just made me fat, groggy and with headaches too) I personally don't take preventives as I am a seasonal episodic sufferer, so I just take stuff when the cycle starts, not all the time.

Many GP's in the UK who do not know about CH try and prescribe more powerful painkillers or migraine drugs- they might work for you but again, be careful as some GP's prescribe strong oral opiates (e.g. Pethidine) and these are not only serious drugs with side effects but have not shown to be effective for most CH sufferers.

Title: Re: No help from dr
Post by Charlie on Jul 20^th, 2003, 7:47pm

Good luck Josie and it helps to let these twerps think they're are the ones with all the ideas. Give him enough slack. (if he's human) Try to make it sound like you're asking questions when you are telling him what a yutz he is.

Here's hoping.

Charlie