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New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Re: Afraid to go back to the doctor!
(Message started by: jcmquix on Jul 9th, 2005, 6:07pm)

Title: Re: Afraid to go back to the doctor!
Post by jcmquix on Jul 9th, 2005, 6:07pm
Well I do not know if you can find a different Dr, that will understand.

But I have been to 4 different Dr's in the last 3 wks. The last Nero Dr I seen I was not going to go back to, but when I went in they asked which Dr I wanted to see, They asked "The Nero Dr or The HA Dr" I picked the HA Dr and she really understood what CH was and helped me alot. She actually gave me everything  I asked for (O2 Script, TREX Vial Script). She was really nice.

I explained that until I met her I was not going to come back, she told me whenever I come in ask for her and no one else.

What I am tring to say is that you just have to search around and find someone who understands you and will work with you, DO NOT GIVE UP !!!

I am surprised how many Dr's have never treated or seen anyone with CH.

My Dr said out of thousands of patiants she only has 3 with CH.

Hang Tough !! Fight the Good Fight !! Vent all you can and stay STRESS FREE !!! (It Helps)..

PFDAN to YOU !!!!

Title: Re: Afraid to go back to the doctor!
Post by firebrix on Jul 9th, 2005, 6:29pm
There are other natural substances which give good results Millie, and you may read all about them here:

www.clusterbusters.com

IM if you need more input.
Wishing you happier days.......

Title: Re: Afraid to go back to the doctor!
Post by Kim Y. on Jul 9th, 2005, 6:32pm
Millie the episodic [smiley=hug.gif]

Don't give up on finding a doctor.  You may need to unfortunately be the one to educate your doctor.

Take in some of the information on the left and tell him/her about your cluster family& what you may have found out.   Doctors get flustered when they can't solve your problem with a simple couple of things but they do understand that what doesn't work for one might or might not for another. If they don't definitly look for another doc.

Find out what works for you.  You need to do that.  I still am looking

Sad thing is that you more then likely know more then they do since it affects you and you are trying to understand your pain.


Quote:
I'm sick & tired of being sick & tired.
I am feeling just like you and I won't deny that one.

Chin up and don't give up ok....PF wishes...Kim

Title: Re: Afraid to go back to the doctor!
Post by cazman on Jul 9th, 2005, 10:10pm
i will repeat what firebrix said we have alternatives that are proven to help alot of clusterheads me included i was questioning it me self till i came to the point you are at and it was do it or continue to live in hell , so go to clusterbusters and read up there are some great folk the will be happy to answer all your question as there are here as well, its what we do we help family and when ya step the door here thats what you are so hang in there have hope and keep the faith and may you find relief soon.

ERIC T

Title: Re: Afraid to go back to the doctor!
Post by vig on Jul 9th, 2005, 10:25pm
ditto firebrix and cazman...
and don't forget Kudzu
good luck

Title: Re: Afraid to go back to the doctor!
Post by Topical on Jul 9th, 2005, 10:36pm
millie,

If you are afraid to see the doctor then you must find another doctor. This pain can mix us up and our emotions. I know what you mean about afraid to do things with friends as an attack may come on. It's something that I have just had to live with when in cycle. I hate it too. There will be other times I can be with them.

Still....there is so much frustration involved. The real you is still there, it isn't going anywhere. The monster will not be taking that away or your best friends. It takes up our free time when we should be living life. Weekends are the worst.

Get a good doctor and think of ways you can do things with your friends while in a cycle. Phone, IM, online games, watching TV shows while talking on the phone, short visits to their house. Hang tight, you are not alone in how you feel.

Title: Re: Afraid to go back to the doctor!
Post by Kevin_M on Jul 9th, 2005, 11:27pm

on 07/09/05 at 17:43:15, millie the episodic wrote:
But now IT has evolved into this Mean Mofo and I am under attack.

I thought I was going to die from the topomax. The verapimil drained me. The lithium scared me


The alternative has been mentioned, so I'll forgo that prospect.  The topomax, verapamil and lithium have been attempts at prescribing a preventative, which without an effective one, having to abort each hit will continue.  
 Granted, whenever I take a new medication, it's effects seem more pronounced.  Verapamil works for me and yes, the first go round was a bit of a draining sensation as well as some swelled feet.  This time, it seems as though maybe my system has gotten a bit more used to it, I take more, it works, and the the side effects have diminished.  
 I went many years without finding a proper preventive but had to push past some discomfort to change the constant course that the beast wished to take whenever it felt like it.  The side effects at first were a change, but so were the daily routine hits eventually, they decreased in frequency.
 The next cycle, I was less affected by the side effects and was able to increase the verap to a more effective level with just a little more faith and persistance, but I couldn't continue the way things had been before not having a preventative.
 Melatonin left me groggy in the morning too when I experimented with that, but that also seemed to pass with time, although I don''t use it anymore.  
 Everyone has different tolerances, but my tolerance for the continued hits without commiting to something which might work was a powerful motivator to continue with it to see if it would work.  
 The oxygen might even take a bit of patience too, but doing it right helps.  For me, getting by for years waiting for the Imitrex nasal spray to work HAD to end, and it wasn't going to do it on its own.  
 Taking any abortive as EARLY as possible when a hit is approaching is always best.  In all actuality, the preventatives attempted and the abortives of oxygen and Zomig are much of what a doctor is capable of
doing, along with seeking the right level of dosage, which you would have a hand in also.
 It sounds like your doctors have been attempting to help.  There are other "non-doctor  approaches mentioned throughout this site, self-education with clusters is everything.  It is good to check with your doctor about them, or alternatively, consult the CB link.

Be brave and seek what will work for you.  Lortabs will fail you, stay pro-active in your pursuit.  Pain can be a mighty motivator, yes, it's a Mean Mofo.  Use this site and stay brave, seek answers.


Kevin M

Title: Re: Afraid to go back to the doctor!
Post by don on Jul 10th, 2005, 9:05am

Quote:
They not only affect my daily life, but they affect my job to.


And the CH dont?

I'd much prefer to ride out the med side effects than the direct effects of CH attacks.

Its a trade off no matter how you look at it.

Title: Re: Afraid to go back to the doctor!
Post by millie the episodic on Jul 10th, 2005, 10:22am
Good Morning All, ;)
It's 8:50am, and I am seeking you because, I am scared to go to sleep. I have just got off 12 hr midnights, after having several jerkers and 2 small episodes at work. HAD to use my zomig, but I waiting as close to day as I could before I did. :o
When I use these I hate to be at work because my job is dangerous, and they do knock me. :'( My doctor say they will not make you drowzy, and you could take it at work, but I beg to differ. [smiley=huh.gif]
That's my point, for someone to even try to tell me what affects my body does not help me with this shit either. They have never taken it themselves, they don't have a clue. :-/
After having been up all night, working like a borrowed mule (because you would not work your own in such a way) I am pouring out my soul, via internet, because sometimes I feel like I'm in this world by myself, being stalked by this dark, mean, evil presence that can not be seen by others. But God knows I feel him. I find myself wondering what  it could possibly be, that I have done to deserve this, and then I think it could be worse. I could be CHRONIC! :-[
I am going to go back to the doctor, so that I can get back on the verapimil and TRY it again. I just have to way my pros and cons and be prayerful. But let me say this, IT IS HARD AS HELL HAVING TO WORK LIKE THIS!!! But I not only have to work like this, but I have to be weighted down by meds. Does a person ever really know how much they can endure?  [smiley=huh.gif]
I'm just tired AND "sick & tired", but I know too that I am not alone!!!
Now that my mind if free from that, I think I will give him a run for my money. Lord knows I have spent enough!
See you when I get up. ;;D

Title: Re: Afraid to go back to the doctor!
Post by nani on Jul 10th, 2005, 10:31am
Millie...please look into kudzu, psilocybin and LSA.  :)
Hang in there. PF wishes, nani

Title: Re: Afraid to go back to the doctor!
Post by Kim Y. on Jul 10th, 2005, 10:47am
Millie, [smiley=hug.gif]


Quote:
After having been up all night, working like a borrowed mule (because you would not work your own in such a way) I am pouring out my soul, via internet, because sometimes I feel like I'm in this world by myself, being stalked by this dark, mean, evil presence that can not be seen by others. But God knows I feel him. I find myself wondering what  it could possibly be, that I have done to deserve this, and then I think it could be worse. I could be CHRONIC!  
 Sweetie I am so sorry that you are being hounded by this beast so much lately.  I wish you PF wishes so very soon and deep restful sleep today.

Being Chronic can't be fun and all I can hope is I am not as well.


Quote:
I am going to go back to the doctor, so that I can get back on the verapimil and TRY it again. Or try Kudzu like Nani suggested.I just have to way my pros and cons and be prayerful. But let me say this, IT IS HARD AS HELL HAVING TO WORK LIKE THIS!!! But I not only have to work like this, but I have to be weighted down by meds. Know what you mean.  I often wish I could just not worry about work but love what I do just hate the residents to see the hell we go through.  Your a strong person and are doing a great job even with the pain.  Beat the beast don't let him beat you.Does a person ever really know how much they can endure? None of us know Millie,  but us Clusterheads have to be the strongest to endure so much and continue day in and day out.  

Title: Re: Afraid to go back to the doctor!
Post by millie the episodic on Jul 11th, 2005, 5:54pm
Well I made it through work last night, had a bad one a thought I was going to have to leave, but I stayed and let my co-workers look at me like fools and keep asking "Are you alright, is there anything I can do, are you going to be alright.
I think that they care, but they just don't know.
After I had to take the zomig, wait 10 mins, run to the bathroom to puke and pee (at the same time, why it that) I finally started feeling some relief after 30 mins or so, then God blessed me with daylight, I had made it through another shift. :-[
When I got home I took my ambien in hopes of getting some much need sleep. I think the BEAST started laughing and calling his friends as soon as a put the pill in my mouth, because about 1 1/2 hrs after sleep came , They wanted to dance and I felt like I had many different partners. At least that is what my mind tells me. :P

I've had 2 attacks today, and am just coming out of the third and will be going to work in a hour. So much for REST or sleep. Am going to the neruo tomorrow, maybe she will be kind, I give up on understanding, just help if you can, PLEASE. :-/
I thought about hooking up a tense unit (used for back pain) My thought is to blast the bastard back. This could be the pain talking, but it sounded good to me when I thought it. [smiley=laugh.gif] Well it's off to the shower to see if I can wash these headaches down the drain! :-*



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