Capt Deb's research file

[Mei Mei]

Thank you, Deb for sharing these sites.   I'm going to take the papers with me when I meet the Pain doctor in the OR and ask him about ablation and also take the two tests on the pain clinic site you just sent.   The results of the test would be good information for my appointment on the 23rd.

Mei Mei

[Captain Deb]

OK, I am having officially a 50% reduction in my back pain level since my peripheral nerve blocks one week ago. YAAAAAAAYYYY!!!!!  I no longer wake up with level 7-8 back pain and have to take 10mg Percocet and go back to bed for an hour before I can move enough to get out of bed. I am keeping a journal and documenting all pain levels, activity, and meds.

Yesterday I made condo reservations for a week at the beach to celebrate my Uncle Bill's 90th  birthday party and Thanksgiving.  I feel like a different person with this drop in pain level.  The day after I get back from the beach I go in for another round of lumbar injections (this time with a few Xanax) and if I keep making progress, I will go in for a full-on nerve ablation.

Got a pretty bad headache running around doing errands this afternoon--boy this Botox can't wear off fast enough so I can start this process for my neck pain/headaches.

I can't believe it has taken almost  8 years to get to this point--I sure hope none of you reading this have to go through all this run-around before you get the relief you deserve!!

Hugs,

Capt Deb

[Captain Deb]

Deb,
Funny you posted this, because I have horrible exertional headaches ever since the surgery and I take indomethicin, which helps amazingly well for them, but unfortunately is VERY tough on the body especially the tum tum.  As always thank you for sharing!  
Liz

I took Indomethicin for 4 days and ended up with violent stomach cramps--not for me at all!  I may end up with a lumbar puncture as Doc Hines begins working on my head.  He wants to check hormone levels, too. It would be great to work up a sweat without working up a brainwreck at the same time, wouldn't it?

Capt Deb

[Lizard]

I took Indomethicin for 4 days and ended up with violent stomach cramps--not for me at all!  I may end up with a lumbar puncture as Doc Hines begins working on my head.  He wants to check hormone levels, too. It would be great to work up a sweat without working up a brainwreck at the same time, wouldn't it?

Capt Deb

I too have had lots of stomach issues with it, but I take prilosec daily and it helps immensely.  It is fantastic to be able to get the heart rate up, I think that exercise has been the single most important thing to gain the ability to do since surgery.  Its what keeps me sane!

I'm interested to see what the lumbar puncture would do, I had one after surgery like many, but they never did a blood patch when I had my CSF leak or anything?  I'm curious for sure.

Liz

[Mei Mei]

    It's odd, but unlike you, I don't get killer headaches with exercise but just from sitting quiet.   I've hired a trainer for the year and until I fractured my ribs helping my father on Halloween, I was exercising and getting back into shape with the routine he's given me.   No headaches after the workout.   I don't know why I get brain wrecks from sitting down or sleeping.    What's the difference between our headaches and exercise tolerance?    I take Avapro 150 in the morning for hypertension.   Maybe it helps with the exercise.   Do you have a blood pressure cuff to take your BP before and after your exercise.   Do it and find out what is happening when you exercise.   My BP is normal during exercise.

Let me know what transpires.  I'll be interested to hear about this.
Mei Mei

[staypoz]

Capt Deb, why would you have a lumbar puncture?  To have anesthetic to relieve pain?  Doesn't sound like a lot of fun.

staypoz

[Captain Deb]

From what I have been reading, exertional headaches can be triggered by abnormal CSF pressure--a lumbar puncture is the way to find that out.  I have been going to the gym off and on since my surgery, but I just get so DISCOURAGED!  I'll make some progress, start feeling good, and then WHAM, some kind of sh*t hits the fan.  It is an almost 35 minute drive to the gym and I get all checked in and changed and get a brainwreck within 5 minutes.  I love my gym, too--it is a Wellness Center with a pool and most of the members are a tad older and the music is not screaming loud.  I want to take a Zumba class and a yoga class, they offer both.  Mostly I want to feel good again, something I have forgotten what it's like!

Capt Deb

[staypoz]

Understood!  I still get exertional headaches, but much less frequently now.  I have given up taking classes at the gym and use a rowing machine instead.  I think that has also helped strengthen my neck, back and shoulder muscles, which I hope also helps prevent the darned headaches.

I go for my neurostimulator trial implant December 1st.  Stay tuned!

staypoz     

[Mei Mei]

FYI, Staypoz:   My neighbor called me yesterday and said her friend in Minnesota has a Medtronic implant  now and feels great on it.   I wish you the best with it and hope you get back to normal life.

Capt:  I was told several years ago by an endocrinologist that I have     Ehlers Danlos Syndrome.   Google it and find out if it is worth pursuing if you have it.   I'm going for my pain appointments next Monday and then on Tuesday the doctor has me scheduled for the OR to do the injections under sedation.    I forgot to mention to him that I have this Syndrome and will fax him tomorrow about it.  My dermatologist told me the big place to go for Ehlers Danlos is somewhere in NC, but I didn't ask where.   I'll see if there's someplace around here to get support and find out definitly which form of it I have because there are several forms.   My daughter has a stronger case than I do.   I also grind my teeth and have tinnitus.   The web information I saw yesterday said that this is part of it. So is sleep apnea and I have that too.  No matter how I label it, I just want to get back to how i was feeling before the surgery.   At this point in time, that's a tall order, but I'm ordering it.

Mei Mei

[Lizard]

   It's odd, but unlike you, I don't get killer headaches with exercise but just from sitting quiet.   I've hired a trainer for the year and until I fractured my ribs helping my father on Halloween, I was exercising and getting back into shape with the routine he's given me.   No headaches after the workout.   I don't know why I get brain wrecks from sitting down or sleeping.    What's the difference between our headaches and exercise tolerance?    I take Avapro 150 in the morning for hypertension.   Maybe it helps with the exercise.   Do you have a blood pressure cuff to take your BP before and after your exercise.   Do it and find out what is happening when you exercise.   My BP is normal during exercise.

Let me know what transpires.  I'll be interested to hear about this.
Mei Mei

Mei Mei,
Its strange because I get headaches several ways, but these are totally different than the ones that start in my neck, but feel the same as when they radiate to the side of my head.  My ear aches and I am forced to shut my eye and forget about bending over to get the water bottle on the ground!  Ugh, thankfully I have something that helps, because those brain wrecks were not something I could "work through" if you know what I mean.

Capt,
I was curious if this pain was from pressure from CSF fluid, would make sense because I've had a CSF leak and can for sure see where it would come from.  How exactly would a lumbar puncture diagnose this? 

Keep up the research, I've just got to find a new Dr who can help!!!  Stuck again!
Liz

[Mei Mei]

I know what you mean, Liz.   It's a mind boggling pain that you just can't describe when it's out of control there's nothing you can do about it but pop some pills, put ice on it and veg out in misery till it goes away.   When this happens daily, you really get down and people just don't want to hear about unless they are very special at empathizing. 

I guess you know I've been referred to Cleveland Clinic Pain Center and am going there next week for a nerve block with a fluroscope.   Were your blocks done properly with a fluroscope to locate the nerves with accuracy?   Give a thought to Cleveland.   You can get there from Hartford on Southwest to Cleveland.    Hope you find a good doctor.
Mei Mei

[Lizard]

Thanks so much Mei Mei, they used xray to locate the bony processes, but not sure if that's a florescope too?  I think they did a good job with the blocks, but I need to find another method to help where the blocks don't.  Currently I'm struggling with the side of my head and up to the crown.  The neck and shoulders are sore, but not like before the blocks, so I can deal with the tenderness.  Its just the rest of the pain that's a mystery now...

Let me know how Cleveland goes! 

Liz

[pattycake]

Hello Ladies -  Pattycake here after some time off.  Sometimes I have to take a break - but today light bulbs are popping off in my head.  I can so relate to (1)  "vegging in a chair watching TV being quiet";  (2) exertion headaches are real causes? thought I was being lazy or nuts; (3) Nerve blocks in my head have worked well,  Botox did nothing for me, (4) managing my meds is a daily chore - guessing how bad it will become today & how much drugs to take; (5) People are tired of talking about it - sympathy has limits after several years (6) Life is passing me by & I miss it !!  I am very interested in the results of your blocks ... I am afraid to do them - but if it works perhaps fear can be left behind.   My Boston Pain doc suggested it once, I asked him to try something else - didn't want anybody in my neck!  I think my headaches are becoming less Intense, so I'm feeling lucky.  It is still a daily battle & I live a very quiet life. But my mood is lifting - even the minor change has been a relief.  Thank you all for sharing your journeys - Chronic pain can be a lonely place.

[Mei Mei]

You articulate so nicely, Patty Cake.   Chronic pain sure is a lonely place and yes, life is passing us by and we're missing it.   I bought a Kayak and only used it once.   Beg off for evening parties because I can't stand going out at night and don't want to be around people as the crowds distract me.   I think people are giving up on me and stopped asking me to join them.   I just want to be home and horizontal as much as possible with an ice pack around my neck and near my meds just in case like what happened an hour ago.

Bless you all!
Mei Mei

[Captain Deb]

Hey pattycakes!
Long time....
I know what you mean by being sick of talking about it!  I don't have much going on in my life but seeing doctors, so what else is there to talk about?  I was an artist and an art professors wife at a University with tons of friends and a very active social life, but all that is gone (except the husband-he is miraculously still around, but has moved from life-partner and playmate to caregiver and God bless him, he is still here!)

Capt Deb