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        New Message Board Archives >> Jul-Sep 2003 >> I just wanted to say hiya 
        
(Message started by: Tiannia on Sep 3^rd, 2003, 12:51pm)

Title: I just wanted to say hiya
Post by Tiannia on Sep 3^rd, 2003, 12:51pm

Hello all - I just started having Cluster Headaches in June - but really had no clue what was happening. I had Migraines for years but maybe once or twice a year - go to bed and its gone. Then I suddenly started having these killer headaches every day or other day. I felt like... well I can not explain it, I dont think that there are words for it. :'( Kept thinking that it was a regular migraine and would stop, but after 4 weeks, my husband told me to get to a doctor. I got to the doctor and she gave me 3 samples of Imitrex. And I have an MRI Scheduled next week. She tells me that I am an oddball with CH because I am female. I always knew I was an oddball, but never guessed that a doctor would confirm that. :P

The Imitrex helped, if I can take them right when I get a shadow. But my insurance will only cover 6 pills for 30 days. Both of us work full time, with a firstgrader and a 1 year old. My day does not alow for me to give into this pain. I just have to force myself to get through each day.

I'm sorry I'm babbling. And if I keep typing I think I'm going to cry - I can feel it building up in my head right now and I know that there is nothing I can do. I just wanted to tell you thank you for this site. It helps to know that it is not just me.... That is if you will accept an oddball ito your ranks. ;)

Tia

Title: Re: I just wanted to say hiya
Post by Cooked Brain on Sep 3^rd, 2003, 12:55pm

hi there tia.

welcome to the board! have you tried injections and/or oxygen yet?

Title: Re: I just wanted to say hiya
Post by Tiannia on Sep 3^rd, 2003, 12:59pm

Nothing yet, they are still trying to confir that it is clusters. Sorry about the typo's I'm trying to keep an eye on the board while at work as well.

I hope that the MRI shows something or that I can find a doctor that will work with me to try and make this stop. I am punchy from the lack of sleep and really not wanted to make my husband deal with it, so I slip out of bed and go downstairs so that he does not realise how little sleep I get. I'm not sure how to explain this to him. I just feel really hopeless atm.

Title: Re: I just wanted to say hiya
Post by Miss_Deleny on Sep 3^rd, 2003, 1:08pm

I'm sorry that you had to find us but glad that you did. If I am understanding you correctly, they have not totally confirmed that what you are having is actually Clusters?

I am hoping that they are not but if they are, this is the best place for you to be ... ALOT of information here in the links to the left and on the OUCH site. Read all you can, take the CH quiz, print out information for your Doc.

The people here are very informative when it comes to what has and has not worked for them. I am not a sufferer, but a supporter of one. Without this site, my fiance' and I would STILL be in the dark.

Wishing you PFDaN's,
~April~

Title: Re: I just wanted to say hiya
Post by Cooked Brain on Sep 3^rd, 2003, 1:14pm

Hi again Tia,

if it is CH the scans and the tests will show you are perfectly healthy. The only way you can get diagnosed correctly is by a dr who is familiar with these HA, I would say you will have better chance with a neuro than with a GP but that doesnt go up every time. Still get an appointment at the hospital ASAP!

Sorry you are having sych a rough time at the moment, but it WILL get better, just hang in there! Your HA are treatable, just have to find what works best for you. Obviously you need something faster than those pills, injections, oxygen or nasal spray.

You have come to the right place for comfort and advise! Too bad most of us are not alowed to prescribe any meds though ;D

remember: it WILL get better!

Title: Re: I just wanted to say hiya
Post by ClusterChuck on Sep 3^rd, 2003, 2:21pm

on 09/03/03 at 12:51:41, Tiannia wrote:

.... That is if you will accept an oddball ito your ranks. ;)

Bingo! You passed the second requirement to be here!

I am SO sorry you had to come here, but now that you are, you are MOST welcome!

Do not appologize for crying, ranting, raging, or babbling here. We are used to it. Most of us have done it MANY times ourselves. One of the advantages of this site is that you are ENCOURAGED to do that and no one will think it odd or unbecoming. We sufferers (and supporters) NEED to do that! We have to have someplace to vent. This is that place. We also can get very silly here. Again, that is needed in our lives, we need to be able to smile!

Also, crying is part of the treatment. We all do it. Just recently there was a post about that. Yes it is ok for a grown man or woman to cry.

You will never find such a large group of concerned, caring individuals as you find on this site. We honestly CARE about you and what you are going through. When we say our prayers and good vibes are headed in your direction, believe me they are! I have personally been the recipient of these, and they are some real strong weapons!

It is very hard on your younguns to see. We know that. It is also extremely hard on your husband. Encourage him to sign up on this board with his own name. Post his concerns and questions. We care about him too. This site will also help him in understanding what you are going through.

Now, enough of that. Sit your butt down, grab an oar, and start rowing! We need you as much as you need us! It takes a team effort to propel this craft along, so start rowing!

My prayers, and vibes are heading in your direction!
Chuck

Title: Re: I just wanted to say hiya
Post by Tiannia on Sep 3^rd, 2003, 2:37pm

I took the cluster quiz and the 30 question test that is also linked, both came up with the cluster headache answer.

I guess what I need is some advise. It is good to know that the MRI will not show for sure what is happening if it is clusters. I'd hate to have it be clear and think that that means they should go away. I do not want to have unrealistic delusions. I have 2 degenerating disks in my back and see a pain mngmt dr for that. He wants to give me chortozone (prob spelled that wrong) shots in my neck, as he does not believe that cluster headaches is a valid diagonsis for any headaches. He says that if the shots make it stop then that proves that it is not CH.

The GP that said it was CH said that I need to try and figure out if there is a trigger. Can glasses cause / trigger this? Some advise here would be appreciated.

I will talk to him about signing in here. I think he wants to confirm it before he believes that it is real. One of those have to SEE it to BELIEVE it types. Which is good cause it helps to keep me grounded and not just let the (what is the term you guys use) beast take over.

Thank you all for your advise and replies. It is really great.

Title: Re: I just wanted to say hiya
Post by Cooked Brain on Sep 3^rd, 2003, 2:46pm

the first advice is read everything on the left and check this site too:

http://www.headachedrugs.com/archives/preventivemeds.html

good luck to you and remember:

it WILL get better! :)

Title: Re: I just wanted to say hiya
Post by ZAIRA on Sep 3^rd, 2003, 2:49pm

Hello Tiannia..... Welcome, now you are in a big family..... oh and Happy B-day!! :-*

I’m afraid to read you’re bad :'(, sometimes I’m wondering what harm we did to stand such pain :'(. BTW my suggestion is to try O2, for me and for many other people here it works, sometimes I don’t use Imigran. This is to stop the attacks. Good luck and never be demoralized, I will pray for you so that you can overcome this bad times... FIGHT!!!

Lot’s of love to you, Zaira ;D

Title: Re: I just wanted to say hiya
Post by ClusterChuck on Sep 3^rd, 2003, 2:51pm

Your eyeglasses are NOT the cause of the CH! Many people have things that will trigger an attack, but none of them are the CAUSE.

I have never heard of glasses being a trigger, but that does not mean that they can't be. The best thing is to have your eyes checked. If you have had those for a year, you are due for a checkup anyhow.

Continue to read the other posts, and all the information at the buttons to the left. I know that is a large "homework" assignment, but it can only help you.

Besides, the test we give you after you finish reading is not so bad. Only 6,382 impossible questions ... ;)

By the way, SMILE!
Chuck

Title: Re: I just wanted to say hiya
Post by Carla_Comiter on Sep 3^rd, 2003, 11:09pm

Tiannia,

There are a couple of ways to get around the Imitrex limit. Many MDs will provide samples, some quite generously.

And if you go to the Glaxco-Smith website, there is a way that they can be advocates with your insurance company to get the limit raised. Some Clusterheads on this site have done it and may be able to give you more info.

Also, be sure to check into Oxygen--your doctor can write you a prescription. Read more about it at this site.

Sorry you're getting hit. Not all Clusterheads are created equal (sorry guys). I just finished a four-week episode, my first in 12 years. So, maybe you just need to make it through a few weeks of pain. Only time will tell.

We are here for you--in very many ways. Sending light and love right now :-*

Carla
During my last episode, a couple of my friends gave me samples of various *triptans (like Imitrex), about 30 pills in all--they were a life saver!

Title: Re: I just wanted to say hiya
Post by taraann on Sep 4^th, 2003, 12:05am

Hi Tianna, So sorry you are going thru so much pain. I too have small children and its so hard to go through a hit and care for them (theyare ages 2 and 3.5 yrs old, I also care for my 16 yr old bro who is being stubborn mouthy brat lately ::)) ) Hang in there hun and we are all there for you whenever you need a good vent/cry or advice. Keep us posted on your doc results k? (btw the imitrex pills do crap for me personaly they take too long to kick in, I wanna try the nasal spray or injections as they are much better from what everyone here tells me)

Title: Re: I just wanted to say hiya
Post by Melissa on Sep 4^th, 2003, 6:29am

on 09/03/03 at 12:51:41, Tiannia wrote:

She tells me that I am an oddball with CH because I am female.

Oh boy, please don't let Boob P. see this! LOL

Hello Tiannia, welcome to ch.com! It sucks you have to be here, but there is no better place for a cluster sufferer! (or supporter) I completely understand about the kids. My son was born in June and 2 & 1/2 weeks later my cycle began! Imagine trying to care for a newborn AND getting hit at the same time! It's definately a juggling act! Well, post whenever you want, and drop me an email if you want to, we're all here for you!

Take care, and good luck!
:)mel

P.S. Oddballs are the NORM here! ;)