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        New Message Board Archives >> 2004 Posts >> Best way to medical treatment?
        
(Message started by: MrSleep on Jan 5^th, 2004, 4:23am)

Title: Best way to medical treatment?
Post by MrSleep on Jan 5^th, 2004, 4:23am

A quick rundown on my history:

Clusters since I was 15 (I'm now 20), and have also been diagnosed with hypersomnia (excessive sleepiness). On top of that, I have an extremely minimal sex drive, and steady degradation of cognitive functioning (including communication, memory, and emotion).

I recently discovered that clusters are directly related to the hypothalamus, the part of the brain that has a lot of control over sleep as well as sex drive and expression of emotions. Could there be a link here?

Since I'm now about three days into a CH cycle, I've decided to once again seek medical aid. In the past I've seen a conventional doctor who was of little help.

Should I go straight to a hospital doctor? Or attempt to find a regular doctor first? I'm worried that by the time I'm able to schedule an appointment, the headache cycle will be over. I just moved, and don't have a "regular doctor" in my new town.

Also, how common is a MRI scan in diagnosis? So far a sleep study, sleep specialist, psychiatrist, and regular doctor have not been able to discover what is causing the hypersomnia and associated symptoms. I feel that a MRI scan would be beneficial, if nothing else than to rule out a problem such as a tumor. However, I am doubtful that most insurance companies would pay for it.

Any advice would be very, very helpful. Thanks!

Title: Re: Best way to medical treatment?
Post by MrSleep on Jan 5^th, 2004, 4:25am

Also, should I attempt to go straight to a neurologist?

Title: Re: Best way to medical treatment?
Post by Mark C on Jan 5^th, 2004, 4:50am

Welcome to the board,
Sorry you need us but glad you found us. Let me see...where to start....how about links....
here (http://www.nei.nih.gov/health/talktodoc.htm)

here (http://www.clusterheadaches.org/doctors.htm)

here (http://www.clusterheadaches.org/medications.htm)

and one of my favorites...

here (http://www.clusterheadaches.org/library/general/index.htm).

There are many methods for dealing with "The Beast" Stick around here and you will see for yourself. Most of us have our own little rituals when we get hammered, I bet you have you own too.

There is more information here and on the OUCH site than just about anywhere else on the plant so arm yourself....with knowledge. Read and print what you find and take it to your Doctor. A Neurologist is good, but not absoulutly necessay. My GP and Neuro kinda tag team me and I can hit both for samples!

There are some more non-standard treatments but those are usually a last resort....I hope you can find your "magic cocktail" to prevent these bastards from stealing your life. Good luck in your fight.

Now click on the OUCH banner in my signature (at the bottom of this post) and join up....welcome home.

PFDAN's
http://www.drfeller.com/Mark/mark.gif

Title: Re: Best way to medical treatment?
Post by Bob_Johnson on Jan 5^th, 2004, 5:33am

The clusters can be treated independently of the other symptoms you mention--so, I'd be looking for a doc with some experience with headache.

The other symptoms (cognitive, emotonal, etc.) are not specific to a particular disorder/problem. I would prefer that you consider a good psychiatrist first and let him refer you to a neurologist for special testing, etc. A psychiatrist will have a broader perspective/training to bring to bear on the issues you mention.

Title: Re: Best way to medical treatment?
Post by ClusterChuck on Jan 5^th, 2004, 6:03am

Sorry you had to come here, but glad you found us. Welcome aboard!

You do not need to see a neurologist, but many of us do, myself included. A good GP many times works fine, but he/she must be ready to learn about Cluster Headaches.

We always recomment an MRI and a CAT scan to eliminate any other causes. Most insurance companies pay for them. I have only heard one person say theirs would not ok it. It is very important, as things in the MRI and CAT scan (like tumors) can cause the same sort of symptoms.

Hve you ever been diagnosed as having Cluster Headaches? Take the Cluster Quiz, at the button on the left of your screen.

While waiting for treatment, try the water X 3 treatment that is also on the left. It works for many.

When you get to see a doctor, and you are diagnosed with CH, ask about oxygen. It is one of the safest, cheapest, and most effective abortives. But it must be taken properly. Read the oxygen info button on the left. Follow those instructions to the letter, or it will not work.

There are also no medication techniques that work for some. Concentrating on something other than the pain, like your favorite song, or type of music. Cold or heat applied to the back of your head, or the side, or the face helps a lot. You have to experiment to find which works for you. Each of us are different and react differently to various treatments. Some take a VERY HOT shower, others put their head in front of an air conditioner turned on to the coldest setting.

I am sure others will offer their suggestions, too. It is most important that you educate yourself by reading all the information here, and on the OUCH site. Because this condition is so rare, we find we have to educate our doctors, many times. Make sure you find one that will listen to you. Print out any information you find here and bring it with you.

Good luck, and tell us how things are going. We all care. Ask any questions you may have, as I am sure you have plenty.

Feel free to send an email to me, or anyone else you want to question, as we want to help, and you may not want to post certain things to the general public. We are here to help you.

Good luck, and keep us informed.

Chuck

Title: Re: Best way to medical treatment?
Post by ckelly181 on Jan 5^th, 2004, 9:48am

Hey Sleep,

Hang out here and read a lot - this place is a godsend.

What meds have you taken in the past? I know it's been mentioned, but 02 can be amazing - I put off using it for years because I thought it was voodoo or something.

Take care,

Chris

Title: Re: Best way to medical treatment?
Post by MrSleep on Jan 5^th, 2004, 2:06pm

Thanks for the help. Should I go to a GP first, or try and go directly to the hospital?

Title: Re: Best way to medical treatment?
Post by Paigelle on Jan 5^th, 2004, 2:06pm

I would think a GP if you can get in quickly. ER not the best place sometimes for us Clusterheads.

Title: Re: Best way to medical treatment?
Post by eyes_afire on Jan 5^th, 2004, 8:20pm

Hi MrSleep

Very interesting. Before I was properly diagnosed with CH, I lumped together some bizarre sleep issues with my CH symptoms and tried to get them all addressed. I learned a few things (the hard way):

If you see a psychiatrist, make sure it's a good one. The damn paxil-dispensing psychiatrist that I saw misdiagnosed me and nearly wrecked me before I even got to the pulmonary specialist (sleep) or the neurologist. IMHO, psychiatrists have a very limited scope for treating neurological disorders.

Sleep studies are far from perfect. Many sleep disorders are not well defined. Be careful.

Don't expect the neurologist to treat your sleep issues and CH issue as 1 condition. I tried to go that route with one neurologist and I ended up having to fire him.

Find a good neurologist and make an appointment for the CH issues. Even if your CH cycle ends right after you make an appointment, go to the appointment anyway. That way, you'll be ready for the next cycle. These neurologists have long waiting lists. If the neurologist knows anything about CH, he/she will understand why you're there even if you're not in cycle.

Most neurologists (and many insurance companies) will only accept patients as referrals. This means you'll likely have to find a GP who doesn't have a big ego and will refer you to a neurologist. Once again, start doing this search now.

IMHO, avoid going straight to the hospital doctor unless you really have to. Whether right or wrong, hospital doctors are not 'optimized' to treat CH patients. Hospital doctors are expecting to see heart attacks, severed limbs, gunshot wounds, and drug addiction. When you come into the hospital, they will not see your CH and you will be classified as something else. If you do need to go to the hospital, it is a temporary solution at best and you'll probably not be pleased with the reception you receive. (This is just my opinion, personally I have never been to the hospital for CH simply because there's no way in hell I could ever get there).

I'm sorry, I know my advice is not very helpful for you in the short-term. You're in a tough situation.

I hope things get better for you.

--- Steve

Title: Re: Best way to medical treatment?
Post by jonny on Jan 5^th, 2004, 8:41pm

on 01/05/04 at 20:20:10, eyes_afire wrote:

Most neurologists (and many insurance companies) will only accept patients as referrals. This means you'll likely have to find a GP who doesn't have a big ego and will refer you to a neurologist. Once again, start doing this search now.

This is when looking like I do comes in handy....LMMFAO....They cower when I bark and I love it, one minute they think Im looking for drugs and the next they will give me a happy ending not to hurt them ;;D

Neuro once told me he never heard of Pro. Goadsby.....I got up and pulled the good Doc's book off his shelf and told him I am not one he wants to fuck with this.....If I could have seen his pants I know they would have been wet.....LOL

Making a threat would have landed me in jail....pointing something out makes him an ass-hole ;;D

.........................jonny

Title: Re: Best way to medical treatment?
Post by Charlie on Jan 5^th, 2004, 11:14pm

Welcome and if you stick around you'll find more help and good ideas about dealing with this horror. We know a lot about this thing.

Getting to a neurologist is what I did. Fortunately I new a number of them and knew what to expect. Mine also knew something about CH. They'll do a lot of tests to eliminate other horrors of course. If you find a good one, he'll have some idea what to do. Using ERs isn't the way to go.

Good luck and let us know how you're doing.

Charlie

Title: Re: Best way to medical treatment?
Post by TxBasslady on Jan 6^th, 2004, 12:01am

Hi MrSleep,

I can't add to what has already been said........so I will just say WELCOME TO THE BOARD!!!

Hope you find the right meds you need to take care of the ha's.

PF vibes being sent to you,

Jean

Title: Re: Best way to medical treatment?
Post by Woobie on Jan 6^th, 2004, 5:18am

Hi Sleep

I can't add much either - but I will say Welcome.. and I hope you stick around.

Read EVERYTHING and go to the doctor of your choice well armed with info. My husband wrote a log of his headaches to take with him - dates, times, durations, meds taken.... etc. and took that too.

I hope you dont find this out the hard way, but a lot of doctors know very little about clusters, and what to do about them.

Good luck, and let us know what happens.

Tina