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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Sinusitis or Clusters?
        
(Message started by: bradboy on Aug 26^th, 2005, 10:34am)

Title: Sinusitis or Clusters?
Post by bradboy on Aug 26^th, 2005, 10:34am

I am a 33 year old male. About a year and a half ago I started getting sinus infections and was treated with anitbiotics each time. My primary care doctor referred me to a sinus specialist, who did a cat scan. The cat scan came back ok but the specialist told me if I kept getting sinus infections we may want to look into surgery. This is the fourth time since I have had a "sinus infection". I was in the ER earlier this week with a horrible headache, they gave me a cat scan, again it came back ok. I went back to the sinus specialist, he put some scope up my nose to see if he could see anything and attempt to duplicate the headache, and he did! When I get these headaches they are accompanied by tooth pain along the gumline. The headache is based in the upper right sinus in the corner of my nose and eye. On a scale of 1 to 10 the pain is a 10. A small amount of alcohol sparks off a headache. The past couple weeks I have been taking sudafed 12 hour. If I take it within every 12 hours, and do not drink, I'm ok. If I miss it, I get a horrible headache after 12 hours. My specialist has recommended sinus surgery. He says if sudafed and antibiotics solve or help the problem it could be a sinus problem, plus he found a "spur" on the other sinus. I have missed an entire week from work now. When I went to the ER, I had woken up at 5am with a headache. I took a sudafed and two ibuprofin and it didn't touch it. I went to the ER and they shot me up with something they called "ibuprophin on steroids", still didn't touch it. Then they shot me up with some percoset and within 15 minutes I went from a 10 on the pain scale to a 2. I am due to have surgery in about a month but was wondering if I should get a second opinon with a neurologist because the symptoms are very similar to that of cluster headaches. Any advice? [smiley=huh.gif]

Title: Re: Sinusitis or Clusters?
Post by BobG on Aug 26^th, 2005, 10:52am

I am not a doctor and can't diagnose, but,
Absolutely, positively get a second opinion.
That sinus doctor sounds a little too eager to do surgery. Maybe past due on the Lexus payment?
You may very well have cluster headaches. Some of what you say are symptoms of clusters. The pain from the sinus area, behind the eye, along the gum line. Alcohol as a trigger. The 5am wakeup. These are all cluster symptoms.
We have all thought sinus trouble as newbies to the cluster scene. Makes sense since that is where the pain is. Then it's off to the eye doctor and then the dentist.
Make an appointment with a neurologist knowledgable in headaches.
And while you're waiting for the doc appoint, click the 'cluster quiz' button on the left side of your screen and tell us the results.
Hope you fail the test and don't get to have clusters.

Oh yeah, Welcome to the board.

Title: Re: Sinusitis or Clusters?
Post by mcf69 on Aug 26^th, 2005, 11:33am

Welcome to the board Brad. You've described some pretty classic symptoms of cluster headaches, there are alot of us here who have been mis-daignosed as having sinus problems. I had a ENT doctor want to roto-rooter my nose once thinking I had polyops in the sinus cavity that were causing the headaches, needless to say I didn't let him do it. Along the side of the page you'll find a few links, find a good nuerologist, print them out and bring them in, describe your symptoms to him/her and hopefully they will be able to figure out if it is sinus related, or cluster headaches. Please let us know how you make out.

Title: Re: Sinusitis or Clusters?
Post by Kris_in_SJ on Aug 26^th, 2005, 7:04pm

Welcome Brad,

Ditto to the above. I can't tell you how many cluster sufferers have undergone needless sinus surgery and teeth extractions only to eventually be diagnosed with clusters.

Don't let anyone roto route your sinuses or otherwise cut you until you get an opinion from a good neurologist.

PF Wishes, my friend,

Kris

Title: Re: Sinusitis or Clusters?
Post by bradboy on Aug 26^th, 2005, 7:37pm

thanks guys. I have an apoitment with a neurologist on tuesday. I will keep you posted. I'm glad I'm getting a second opinion.

Title: Re: Sinusitis or Clusters?
Post by burnt-toast on Aug 27^th, 2005, 3:58am

The second opinion is the best way to go. Good luck with the Neurologist. Go prepared with lots of details about your symptoms.

Best Wishes

Tom

Title: Re: Sinusitis or Clusters?
Post by Kiwiinoz58 on Aug 27^th, 2005, 8:15pm

Hi Brad,
Sorry you had to find us but it sounds as if you belong with us. I found after all the wrong diagnosis etc that taking a lot of printed info is very useful when seeing the neuro. Some of them just don't have the experience. All the info you need is here on the left and perhaps ask someone for a link to the best stuff to print out. The people on here are fantastic!
Good luck and cheers,
Jacqs

Title: Re: Sinusitis or Clusters?
Post by bradboy on Aug 30^th, 2005, 11:37am

OK, I just got back from seeing a neurologist and he said not to have the sinus surgery. He scheduled me for an MRI and gave me 4 samples of "Maxalt-MLT" (rizatripan benzoate). He gave me one in his office and told me to take one at 9pm. He said if I wake up with a headache to call his office tomorrow. He did say it looks like I have cluster headaches and that I was getting rebound headaches from the sudafed because I've been taking it to long and my body is waiting for it every 12 hours.

I am really scared I'm going to get another headache. It seems to me this medication is to make a headache go away when it happens and not stop them from happening again. He said he could put me on a once a day pill for the rest of my life but since I go like 3 months in between episodes he didn't think I should go that route.

Yesterday afternoon at 4pm I had the worst headache yet. I took 2 excedrin migraine and after 15 minutes it didn't go away so I took another sudafed 5 hours early. It still didn't go away so I used an ice pack on my head and was pacing the house moaning in pain. I tried laying down and started balling my eyes out [smiley=bigcry.gif] and got up and took a percoset, then another percoset and called my mom crying. She came over and the headache was gone. THEN around midnight just when I was ready for bed it started coming back again. :( So I took two more percoset and it stopped.

Has anyone tried the Maxalt-MLT? Do you think I'm not going to get another headache because I took it? I don't have a good feeling about this...... :-/

Title: Re: Sinusitis or Clusters?
Post by E-Double on Aug 30^th, 2005, 3:05pm

Hi Brad,

It appears that you are a member of the club.
There is so much to learn.
You will need to learn about preventative, transitional & abortive therapies.

I'm gonna give ya some links to read, memorize and be able to regurgitate on cue ;) Knowing as much as you can will help you become not only a wonderful and necessary advocate for yourself but to other CHers because it is information that needs to be passed on.

This is a great resource to know like the back of your hand...print it out and give it to the doc

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!!

If you want an abortive with the least amount of side-effects OXYGEN should not only be requested but demanded from your doctor!!!

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753

If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Like I said we are all different.

Some tricks that I used to use and sometimes still do are:

*Wrapping a bandana tightly around my skull (be careful)
*Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering
it.
*Going from Steam to Frigid shower.
*Standing infront of A/C
*Icepacks or frozen veggies on the back of the neck or eye
*Tons of STRONG coffee.

Maxalt is a medicine that is in the triptan family.

http://en.wikipedia.org/wiki/Triptans

Most of us that use triptans seem to have a preference for either Imitrex or zomig. I think they are faster acting.

If absolutely necessary, my triptan of choice is Imitrex injections. They work damn fast.

Since you are new I will not overwhelm you with some debate regarding triptan use. Suffice it to say when dealing with meds for CH you are picking your battles and must choose the lesser of two evils.

Good luck to you Brad and know that you are not alone!!!!

Eric

Title: Re: Sinusitis or Clusters?
Post by bradboy on Aug 30^th, 2005, 3:44pm

Thanks for your help Eric I truely appreciate it. I really don't want to be part of this club but I'm so glad that I did find it because I don't feel so alone.

As for the melantonin, if it causes mild depression it wouldn't be for me, I'm already on paxil for severe depression and have been on anti depressants half of my life. I will look into it however.

After reading through some of the posts on here I get the impression it is difficult to get O2 or injections prescribed wether because of insurance issues or stubborn doctors I don't know.

I have a friend who was over last week when I had a CH attack and she got me an ice pack and told me to put it on the back of my neck and it helped somewhat. I also remember a few years ago I had a horrible headache from taking to much medication I think and tied two socks together and tied it around my head which did help. My last CH I tried tying a dishtowel around my head I had used with an ice pack but it wouldn't go around and at that point I just started crying I think.

thanks for the links I will read them now. I have been reading through here this afternoon as well as some other sites on CH.

I called my doctor's office to tell them I had read online that the medicine they gave me isn't used for CH and I'd rather go on the every day pill he mentioned when I saw him today but they haven't called back yet.

I'm so scared to go to sleep tonight....... :-[

thanks again

Brad

Title: Re: Sinusitis or Clusters?
Post by E-Double on Aug 30^th, 2005, 4:04pm

Check your Private Messages.

Good luck!

E

Title: Re: Sinusitis or Clusters?
Post by lionsound on Aug 30^th, 2005, 5:41pm

on 08/30/05 at 15:44:51, bradboy wrote:

As for the melantonin, if it causes mild depression it wouldn't be for me, I'm already on paxil for severe depression and have been on anti depressants half of my life. I will look into it however.

Welcome Brian :)

I've been on antidepressants and have been a depression queen and the melatonin was not a problem for me. I was not on paxil...but other meds in the SSRI group. I did ask my doc before I tried it. Helped my head and my sleep.

I suggest asking you doctor about it and start at a low dose.
I'm also fond of ice or a bag of frozen peas on my head.....going to fetch one now, in fact.

I'm so sorry you are hurting right now.
Sometimes I'm afraid to sleep too.

be well and Pain Free!!
-lionsound

Title: Re: Sinusitis or Clusters?
Post by brian_m on Sep 3^rd, 2005, 12:47am

hi i get them this time of year for 22yrs . i didnt "really" know what i had untill i found this web sight a couuple days ago. "DONT DO DOPE YET" . try H2o, gallons and gallons. drown those f---king &^&^*^5$$^!!!!.

Title: Re: Sinusitis or Clusters?
Post by brian_m on Sep 3^rd, 2005, 1:13am

a little more specific would be to find out youur cycle and every year about 2 months before youu get them , drink 4 litres during the day and 4 litres at night (before bed) . water......good. dope ..........bad... (unless of coarse its good bud.) keep drinking lots of water and dont even think of alcohal untill your suure youur in the clear.

Title: Re: Sinusitis or Clusters?
Post by fireball on Sep 5^th, 2005, 6:51pm

Hi Brad-
I know that the percocet will help the pain, but my best advice is to avoid the narcotic pain meds at all cost. My husband began with episodic clusters almost 8 years ago. He would have attacks for a few weeks and then be pain free for several months. The attacks, of course, where terrible, and after no response to the typical meds, our family physician meant well and just wanted to help him be pain free, so he prescribed percocet. It took care of the pain, which was great, but cycle after cycle the dose needed to be increased, and after a while it just stopped working. He eventually went to oxycontin. That also failed as my husband became chronic. We read about a year later that research strongly shows that narcotics can make episodic sufferers chronic. If the research is correct and there is any link, I'd be on the safe side and stay away from the percocet. I pray that you will stay episodic and that the typical treatments (imitrex, oxygen, etc.) will always work for you.
Best of luck.

Title: Re: Sinusitis or Clusters?
Post by kelliev on Oct 14^th, 2005, 8:01pm

on 09/03/05 at 01:13:41, brian_m wrote:

u the naughty one, email me