please try to post your status/what's going on with you if you're logging in.....

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please try to post your status/what's going on with you if you're logging in.....

Post  Porsche Fan on Wed 25 Jan 2012, 1:37 am

i know all of us are going through some tough times, but please post to our friends how you are doing.

i'll start. tough time for me. lots of problems and seeing a lot of docs. more in the future. i'll post as issues develop. so far on the list to see....gastroenterologist, neuro-endocrinologist, hemotologist/oncoloist, cardiologist.

the forum is a bit slow, so please take a moment if you can to post.

.....i know a lot are in tough circumstances at the moment. please if you can, say "hello."

i've been lurking and checking in, but not posting much.

thanks,

porsche fan.


Last edited by Porsche Fan on Wed 25 Jan 2012, 2:31 pm; edited 1 time in total (Reason for editing : i should try and proof read more often.)
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Re: please try to post your status/what's going on with you if you're logging in.....

Post  Cluelesskitty on Wed 25 Jan 2012, 4:13 am

Thanks for this post , Marc.. I also noticed the low low frequency for quite a time which frankly, worries me.
So it's so nice of you wanting to pipe in and be active.

myself, I am barely hanging on these last few days, because I had a minor sinus infection last week which gave me way more
persistent, dull, relentless migraine than usual, and I used more of my pain medication than I would normally do.
But I don't want to go to my dr before my usual date so I am toughing it out - all the back pain lower and upper, arggh.

Can't sleep well because of the pain again, ack.

That's why I am not as active as I would normally be -low low energy and mood.

How about the rest of you? where are you disappearing to, peeps? I miss you!

yeah, please stay in touch!


Risa

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Re: please try to post your status/what's going on with you if you're logging in.....

Post  30yrsofheadache on Wed 25 Jan 2012, 6:28 am

Ok, I am going to post even though I have been posting a lot about my surgery. I think my migraines are easing up justa tiny amount. but, that is enough to give me hope. I do believe Menopause will be a really good thing for me since my migraines are mostly hormonal. When I skip a month now, the head pain is more manageable. Add to that having the weight lifted off my front that has caused neck pain and headaches, I am chipping away at the pain. A slow and frustrating process, for sure.

I am trying not to cry today since it is such a trigger. But my older daughter moved into her own house yesterday and I already miss her. Zoe is hanging in there at college. Her migraines are tolerable right now. A funny note: Zoe weighs less than 100 lbs, usually. She texted me that she is trying out for the Rugby club! that girl will give me heart failure one of these days! She has never played any rigorous sport like that. Her usual sport is horseback riding! Oh well, how crazy can it be at a school like William and Mary? I know nothing about Rugby, guess I better read up on it...
Hugs,
Cindy

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Re: please try to post your status/what's going on with you if you're logging in.....

Post  kimsmom on Wed 25 Jan 2012, 4:03 pm

My headaches and migraines have been especially bad this past 30 days. I cannot seem to get them under control. Taking way too many pain meds but if I did not I would not even be able to work. I hate to tell you Cindy but I am still waiting after menopause for a break in my headaches. When I was pregnant with my girls I was basically headache free so I thought the same, that once menopause hit I would have some kind of relief. No way. I am 58 now and still no relief. It is so depressing. Very depressing when I thought along the way I would get some type of relief. I have chronic daily headache with migraines about three times a month.

I also have back pain 24 hours a day. I also have something wrong with my left foot. They thought it was tendinities and it still may be but doing therapy for four months and no change has made me stop and now I want to get an mri to really know what is wrong. I have gained 10 pounds in the last year due to not being able to walk long distances because of my foot. This does not help my back situation either.

Things could be worse and I know that but I am still depressed about all the pain I am in all day long. I just try to keep busy and hope that in time my headaches do subside. I would love to lose weight and hope that the pain in my back and foot then would minimize. I am going to look for a new doctor soon. Just want to pay off the holiday bills first!

I lurk here often but not as often as I used to due to taking care of my mother half the year. My free time is very limited when she is here living with us. I pray often and think often of all of us here and hope someday there is some type of breakthrough for migraine.

kimsmom
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Re: please try to post your status/what's going on with you if you're logging in.....

Post  milo on Wed 25 Jan 2012, 8:12 pm

Great post idea pf!

It's great to know how people are, even when the news is not so great.

I've been hanging in but it's been tough. I was really unwell for three of four months but things got a bit better once I got my ferretin level up.

My head has been bad, so I'm questioning my current treatment plan. I've also gotten myself on the waitlist for a breast reduction to help ease the tension in my neck.

On the positive side, I've managed to work and have made a great impression in my new position. Smile
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Re: please try to post your status/what's going on with you if you're logging in.....

Post  Sara79 on Thu 26 Jan 2012, 5:50 am

I've been a bit quieter these last few weeks. My head had been calm, but I think it was just because something else acted up, requiring daily pain control options. I've got a cyst on my left ovary (sorry gents, I'm trying to stay with the least cringe factor level of info) This, and the meds they give me have made my brain into something like tapioca pudding, but today is the first migraine I've had since mid-December.

In other news, I've completed one of my respiratory exams, so I can get liscenced and get a job, whoopie cheers

Please grab your voodoo chicken and think happy thoughts for my MIL, please. The breast cancer that we thought she'd beaten, has metastasized. It's in her lungs, some lymph nodes, and has started on her ribs. She started her second round of chemo last Friday, and she had a better experience than the very first treatment. She'll have another CT scan in another 2 weeks.

Thanks PF, I think this thread is a good thing.

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Post  Anna's Mom on Thu 26 Jan 2012, 3:27 pm

I am fine. No complaints as far as health.

Anna banged her head hard last night, and she is suffering even more because of that. It's always something!

Bought our airline tickets to go back to Philly next month. Got a good deal this time around.

Cheryl

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Re: please try to post your status/what's going on with you if you're logging in.....

Post  Cluelesskitty on Thu 26 Jan 2012, 9:10 pm

Oh, Sara, I am so sorry about your MiL !!

I will keep her in my thoughts and keep sending positive vibes so she can go thru chemo with as little hardship as possible
and terrific results!
I never stop believing in miracles, so I hope your MiL will beat this again, too!

Risa

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Re: please try to post your status/what's going on with you if you're logging in.....

Post  Sara79 on Fri 27 Jan 2012, 10:36 am

Thank you Risa!

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Re: please try to post your status/what's going on with you if you're logging in.....

Post  Paradox on Fri 27 Jan 2012, 3:42 pm

Good idea, PF, since I'm one that drops in and out.

My work load has been very heavy. In addition to a forty hour week I'm on two Boards that are currently very active. One of the Boards I have to drive 2 1/2 hours one way for the meetings. So I am POOPED.

My migraines are under control. The best the have been in years. I am taking 60 mg of Cymbalta at night. Any higher than that and I go to zombie land.

I have chronic sacri-ilietis and now bursitis as a result of it. This causes daily 7/6 pain levels. I am on high doses of various opioids to keep it at a 2/3 so I can work. This of course causes chronic constipation. I've had one severe bout with diverticulitis (7 day hospital stay) and worry constantly whenever I have a pain in the lower left side of my gut.

Add a handicapped child and a hubby who is very loving but is really another child to care for and sometimes its hard to cope.

Every year I go through a holiday depression which can last anywhere from 3 weeks to 3 months. This year was particularly long and hard. When I get depressed I totally cocoon which worries my close friends. Risa has my home phone # if anyone gets worried in the event of my silence.
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Re: please try to post your status/what's going on with you if you're logging in.....

Post  lesherb on Fri 27 Jan 2012, 5:43 pm

So glad I took a peek in here. Marc, I've been a poor pen-pal. I know you can manage all of those medical appointments but I worry about you. Gosh, I forget who mentioned William and Mary and Rugby....my now 40 year old nephew went there and he got into Rugby, also. It was not something anyone would expect him to do (he's cerebral....physically fit but not a jock at all). He survived.....more important, my sister-his mother, survived!

I am a week past my bladder sling surgery. My youngest child grabbed my bladder on the way out the door (during birth) and tried to halt the process....that left me 23 years later, with frequent trips to the bathroom. The surgery went fantastically well. Hardly any pain (only took my normal daily head pain dose) and just an overnight stay in the hospital. Once they removed the foley catheter, I felt 90% better.

I caught a bug during surgery, I think (LOL) as I have had a bad cough ever since (though it's much better now). The weather is gorgeous here (too warm yesterday but nice and cool tonight). So good to see you all here.

£eslie

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Re: please try to post your status/what's going on with you if you're logging in.....

Post  Porsche Fan on Sat 28 Jan 2012, 1:04 am

fun stuff with me....

got scheduled to see a hemotologist/oncologist within 6 calendar days, will see a kidney specialist, then a GI speciaist.

my neuroendocrine doc contacted me today for a personal conversation-that was positive.


Last edited by Porsche Fan on Sat 28 Jan 2012, 5:15 pm; edited 1 time in total
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Re: please try to post your status/what's going on with you if you're logging in.....

Post  Cluelesskitty on Sat 28 Jan 2012, 1:09 am

Yikes. That sounds serious, Marc Neutral

I don't know, I don't want to sound doom and gloom but this sudden stir like throwing a rock at the hornet nest
on one had is very good because it's a sign of an excellent care, on the other it is tad bit worrisome.

Let's hope it's the first!

Risa

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Re: please try to post your status/what's going on with you if you're logging in.....

Post  Porsche Fan on Sat 28 Jan 2012, 3:17 am

yes, you would think that seeing an oncologist under 6 calendar days would be upsetting. but however i see it as a positive. i do not however expect any large findings to be found from an initial converation. i'm guessing there will be further labwork to follow. if it happens, then that is the process.

it's simply a function of reviewing a problem and alternative analysis....that's all.

Unforuntealately one of the medications is causing some very negative side effects--it's looking that at this point it just have to deal with it.

i foresee some tests, but i will deal with them as they come. we hope to gather new info about my health. all on board i think are looking to improve it. as usual, i am hoping for some positive results.
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Re: please try to post your status/what's going on with you if you're logging in.....

Post  tecky on Mon 13 Feb 2012, 11:52 am

Thanks for such a good idea for a thread, PF!

I've just not been on any of the forums much this past year, so I'm sorry I haven't kept up with everyone. It's not for lack of caring. I've missed you all but I tend to isolate when I'm not feeling well.

I had a cervical medial branch block RF ablation last July at a pain clinic in Minnesota and have been having countless side-effects from it. Several rounds of steroids and some not-so-pleasant issues that go with with all the meds. The chronic migraines have been status quo. Actually my neck, upper back, arms, hands and fingers have been worse, but the combination makes it difficult. I need to go back for a follow-up once the weather is better for traveling.

Just feeling worn down and low from everything.

Now, I'm trying to decide whether I want to change migraine specialists from the one I currently go to in Chicago (they've lost some doctors from their practice, including my original doctor, and the one I have now continues to reschedule appointments and not really listen). Any specialist is a long trip for me. Traveling is miserable. Anyway, it's a big decision to find another place to go.

It seems like everyone is dealing with the ups and downs of life with migraines as well as changing symptoms and added comorbidities and other medical issues.
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Re: please try to post your status/what's going on with you if you're logging in.....

Post  Cluelesskitty on Tue 14 Feb 2012, 7:55 pm

Aww looks like you went thru so much Tecky, I didn't know, so sorry to hear about that!

No wonder you didn't have any strength left to post. I hope things are getting slowly back to normal for you, though.
And you've been missed, and I am glad you are back now.

Well, I am not sure what advice to give you re: current neurologist.
This one doesn't sound like you can depend on him/her,
and personally I can't imagine anything worse than running out for your meds, counting days for your apmmnt
and then finding out it's been cancelled affraid

If you have to travel tot his one anyway, so what's the difference if you have to travel anywhere else?
At least maybe another one will take better care of you, Hopefully.

Let us know what you have decided?

Risa





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Re: please try to post your status/what's going on with you if you're logging in.....

Post  susan99 on Tue 14 Feb 2012, 9:31 pm

hello hello!! wow i have found all you guys again! from you know, the other site. been a long time!

been going through quite a tough patch too. waiting to be admitted to the hospital for dhe and to see if they can bring the pain levels down. this is one thing that i haven't tried yet. what have your experiences been with it?

all the best


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Re: please try to post your status/what's going on with you if you're logging in.....

Post  Cluelesskitty on Wed 15 Feb 2012, 7:26 pm

Susan, what do you normally take for your M episodes?

I take a triptan and narcotic painkiller together.
DHE and other ergot derivatives never worked for me, not the right meds for me,
but I heard for the right M patient they do wonders.

Fingers crossed it will work as well for you!

Risa

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