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Pressure issues.... being handled?
For those of you who have pressure issues... What are they doing for your pressure issues? Do they think you have PTC/IH? I have done the Medrol Dose Pack and am now on the Lasix. The MDP was HORRIBLE!!! The Lasix, well, since most people I have heard have had to constantly pee, have dry mouth and eyes, etc... I'm wondering if I should have been tried on a higher dose. The only time I have to REALLY pee, is the first pee after taking it. Other than that, nothing's different. **sigh** I really want all this to be a true test. I want to have some definitive "results" from all of this to show Dr. Di... but I don't know.
I do not want to have a LP, nor am I going to jump at a shunt if he decides this is PTC/IH. Honestly, I have not found anything that sounds like the perfect solution. I had three doctors to try to see prior to a decision (my urologist, a disease research specialist for another "rare disease" they think I have, and a new neurologist). Hopefully I can get some time to chat with them prior to the 30th. I need their direction. I have two other big health issues and they MUST be given consideration in all of this. The three different specialists, along with Dr. Di, are going to have to work with one another to come up with a plan that is best for me. I'm really hoping they are all willing.
Sorry for going on... I'm just really stressed right now. That's part of the reason I'm not on much. I hate to be a downer. I know we are all here for each other, but it means so much more to me to be a ray of sunshine to all of you! I don't play this part very well... and it *****. I know you know! So I am just being crabby by myself. When I get my sunshine back... I spread it around to all of you! :)
Thank you in advance for sharing your experiences with me! (And PLEASE... share the good and the bad! I want to know!) Much appreciated!
((HUGS)) and blessings!!!
I do not want to have a LP, nor am I going to jump at a shunt if he decides this is PTC/IH. Honestly, I have not found anything that sounds like the perfect solution. I had three doctors to try to see prior to a decision (my urologist, a disease research specialist for another "rare disease" they think I have, and a new neurologist). Hopefully I can get some time to chat with them prior to the 30th. I need their direction. I have two other big health issues and they MUST be given consideration in all of this. The three different specialists, along with Dr. Di, are going to have to work with one another to come up with a plan that is best for me. I'm really hoping they are all willing.
Sorry for going on... I'm just really stressed right now. That's part of the reason I'm not on much. I hate to be a downer. I know we are all here for each other, but it means so much more to me to be a ray of sunshine to all of you! I don't play this part very well... and it *****. I know you know! So I am just being crabby by myself. When I get my sunshine back... I spread it around to all of you! :)
Thank you in advance for sharing your experiences with me! (And PLEASE... share the good and the bad! I want to know!) Much appreciated!
((HUGS)) and blessings!!!
Thank you all! I know the wonderful people in this group. Am I am SO thankful for all of you!
I'm not ready or willing to say the surgery wasn't successful... only that it perhaps didn't totally relieve all of the symptoms... and maybe I should add "yet" to that. This pressure issue, as I understand, is USUALLY relieved through decompression, but not always. I'm willing to give it time, but I do have to have something in the meantime to help with it.
Right now the Lasix seems to be working, somewhat, but I can't remain on it because of my kidneys. At least, not without my urologists involvement. So that's the next step... getting an appt with him. (Right now my head is a thermometer and barometer!)
Keeping my fingers crossed!
Thank you all for your care and support! I love and appreciate my Chiari Family and Brain Buddies SO very much!
((HUGS)) and blessings!
I'm not ready or willing to say the surgery wasn't successful... only that it perhaps didn't totally relieve all of the symptoms... and maybe I should add "yet" to that. This pressure issue, as I understand, is USUALLY relieved through decompression, but not always. I'm willing to give it time, but I do have to have something in the meantime to help with it.
Right now the Lasix seems to be working, somewhat, but I can't remain on it because of my kidneys. At least, not without my urologists involvement. So that's the next step... getting an appt with him. (Right now my head is a thermometer and barometer!)
Keeping my fingers crossed!
Thank you all for your care and support! I love and appreciate my Chiari Family and Brain Buddies SO very much!
((HUGS)) and blessings!
I think mine was mostly due to a new medicine I was taking, Nortriptyline. It really helped with my arm pain, but caused my headaches to be much more severe, so I stopped. Now I am not sure what do to. Hang in there, you're still healing after major surgery. At the 6 month mark I felt amazing, but I think I did too much and at the 10 month mark it came back to haunt me...now I take it easy.
HI Lori
I understand how you feel...I tend to do the same...if I am feeling really bad I don't want it to rub off on others...
But, they are right...we should use this site to help ourselves feel better too...you are a great inspiration and such an uplifting personality...so you are allowed to be a downer sometimes ESPECIALLY with all the stuff you have been going through.
As for the pressure...I had a terrible time with pressure after the surgery...in fact the 2nd night after..it was worse than it ever was b4 and I was in so much pain that I thought my head was going to blow up. I really believed that I was going to die, that something had gone wrong and with this type of pressure....I wouldn't make it through. I kept ringing the night nurse telling her this..they didn't have a lot of pain med choices to give me. So I decided that I was going to will myself through and let God make the choice...at that point I really didn't care if I lived or died.. How's that for being a downer? lol
But, it did get better...it was really, really slow... You are only about 2 months post op and I was still having pressure headaches at that time. Once I got over the 2 month mark..it did start to get better...by 4 months it was quite a bit better...a 5 months it is gone more or less, unless I do something stupid that involves straining. Why I had problems with the pressure, I don't know. I was stubborn and never contacted my NS about it...it isn't quite the same here in Canada...no one really would be able to give me an answer anyway. I do have a follow up MRI in a few weeks but I suspect whatever was causing it resolved itself. So...in a long winded way...what I am saying is have faith..it may sort itself out over time. I really, really hope for you that it does...
Take care XX
Carolyn
I understand how you feel...I tend to do the same...if I am feeling really bad I don't want it to rub off on others...
But, they are right...we should use this site to help ourselves feel better too...you are a great inspiration and such an uplifting personality...so you are allowed to be a downer sometimes ESPECIALLY with all the stuff you have been going through.
As for the pressure...I had a terrible time with pressure after the surgery...in fact the 2nd night after..it was worse than it ever was b4 and I was in so much pain that I thought my head was going to blow up. I really believed that I was going to die, that something had gone wrong and with this type of pressure....I wouldn't make it through. I kept ringing the night nurse telling her this..they didn't have a lot of pain med choices to give me. So I decided that I was going to will myself through and let God make the choice...at that point I really didn't care if I lived or died.. How's that for being a downer? lol
But, it did get better...it was really, really slow... You are only about 2 months post op and I was still having pressure headaches at that time. Once I got over the 2 month mark..it did start to get better...by 4 months it was quite a bit better...a 5 months it is gone more or less, unless I do something stupid that involves straining. Why I had problems with the pressure, I don't know. I was stubborn and never contacted my NS about it...it isn't quite the same here in Canada...no one really would be able to give me an answer anyway. I do have a follow up MRI in a few weeks but I suspect whatever was causing it resolved itself. So...in a long winded way...what I am saying is have faith..it may sort itself out over time. I really, really hope for you that it does...
Take care XX
Carolyn
I had surgery 1.5 years ago and I think my pressure got worse, but I am still happy I had the surgery. It does suck though!
COMMUNITY LEADER
Lori...crabby or not if u come on the site we can try to lift u up, that is what support is for....u do not need to be sunshine and lollypops all the time...for goodness sake u have chiari and other related issues....support is for u to vent , us to listen and hopefully raise u up : D
I pray u do not sit too long by urself as that may take u into the dumps further, know we r here, even if we can not offer advice on ur immediate issue, we can listen and give u the comfort of friends.
I understand needing sometime off the comp...but don't stay away too long and know we r here 4 u!!
"selma"
I pray u do not sit too long by urself as that may take u into the dumps further, know we r here, even if we can not offer advice on ur immediate issue, we can listen and give u the comfort of friends.
I understand needing sometime off the comp...but don't stay away too long and know we r here 4 u!!
"selma"
I cant offer you any advice as I dont have the issues you are dealing with......as it states at the top of this page.....>>>This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation<<
Ray
Ray
I am new and still working on getting a diagnosis and finding out what is going to be my best option. My headaches are like a pressure cooker about to explode so if it is anything like that I can only imagine!
They are every day...24/7
I may get a couple days off every couple weeks or so but thats it. My symptoms are getting worse. In the last month I had 4 days with no head pain/pressure. Really hard to hold down a job and continue to be a wife and mom of three.
My neuro has me on bp meds right now hoping that will help with the pressure. I have had a couple days where it seems to have taken the edge off but my symptoms and head pain do cycle so it may take a while to see if it really is working. It is a low dose because my bp is normal so we dont want it to get too low...
Good luck to you and if I find anything that works I will let you know. Ditto for you too I hope. lol
I too love my new family ...... Yes it is great knowing that I am not crazy and all that I go through every day (pardon the punn) is not all in my head)
Jen
They are every day...24/7
I may get a couple days off every couple weeks or so but thats it. My symptoms are getting worse. In the last month I had 4 days with no head pain/pressure. Really hard to hold down a job and continue to be a wife and mom of three.
My neuro has me on bp meds right now hoping that will help with the pressure. I have had a couple days where it seems to have taken the edge off but my symptoms and head pain do cycle so it may take a while to see if it really is working. It is a low dose because my bp is normal so we dont want it to get too low...
Good luck to you and if I find anything that works I will let you know. Ditto for you too I hope. lol
I too love my new family ...... Yes it is great knowing that I am not crazy and all that I go through every day (pardon the punn) is not all in my head)
Jen
I have dealt with pressure issues in my head since before surgery. This is nothing new. However, what happens a lot of times is, post decompression surgery, a lot of people's pressure issues go away (so I'm told.) Mine did not. I am currently undergoing diagnostics with two meds to test for pseudotumor cerebri/intracranial hypertension. This does not always accompany CM, but can. It can also be present without CM.
You can find more information on PTC/IH at: http://www.ihrfoundation.org/
You're right, this site is wonderful! It was one of the first places I found that I could actually TALK to other people who were really dealing with the same thing I was, and who knew I wasn't totally crazy! LOL!
Chiari has blessed my life in ONE way... In that it has given me a WONDERFUL new family, whom I care deeply for... even though I haven't seen most of your faces or ever heard your voices! You have all TRULY been a huge blessing to me!
Even the days when I'm not on here, I pray for everyone. I may not know the specifics for everyone for that day, but God does, and He has it handled! And He's working on me too! :) You are all - at least collectively, if not specifically - in my heart, my thoughts and my prayers!
Blessings to you!!
You can find more information on PTC/IH at: http://www.ihrfoundation.org/
You're right, this site is wonderful! It was one of the first places I found that I could actually TALK to other people who were really dealing with the same thing I was, and who knew I wasn't totally crazy! LOL!
Chiari has blessed my life in ONE way... In that it has given me a WONDERFUL new family, whom I care deeply for... even though I haven't seen most of your faces or ever heard your voices! You have all TRULY been a huge blessing to me!
Even the days when I'm not on here, I pray for everyone. I may not know the specifics for everyone for that day, but God does, and He has it handled! And He's working on me too! :) You are all - at least collectively, if not specifically - in my heart, my thoughts and my prayers!
Blessings to you!!
Hey lady! You are one of my FB buddies! I recognize the picture! LOL!
I DO understand what you mean... and I DO appreciate the wonderful people I have met here... more than I can say. It's not that I don't value the information and words of all of you... not that at all.
I guess you would just have to know the ME prior to all of this to understand. I have always been the giver of comfort... it is SO not me to receive it. Not that I don't, but even if I need it, I want to be giving it back at the same time. I haven't been there much lately, so it just makes me feel more sad not to be giving. I have worked since I was a child (on the phones) for March of Dimes, MD and others, along with doing fund raising for my kids' school, serving the homeless, etc... and THAT is ME. A bringer of sunshine and laughter, a cheerleader, a fund raiser, an advocate. When I can't be that to all of you - well, it makes me feel even more in a funk. So I just don't get online much during those times.
Now, since my surgery (endoscopic decompression/C-1 laminectomy on 4/2/10), I have had some struggles that have had me down, physically. That has been a good part of this right now. I'm not willing to concede yet, so I'm pushing on... but since I'm not feeling too good, I'm not online as much either. And the LAST thing I want to do is come on here only to crab!
SO! That's more about ME. I hope you understand.
I am so blessed to have all of you... and I know that... as sure as I know anything. And when I DO feel I need my chiari family, they have always been there. And I love all of you for that! That knowledge is NOT lost! :) In you all, I am truly blessed!
Wishing you blessings in return!
Lori
I DO understand what you mean... and I DO appreciate the wonderful people I have met here... more than I can say. It's not that I don't value the information and words of all of you... not that at all.
I guess you would just have to know the ME prior to all of this to understand. I have always been the giver of comfort... it is SO not me to receive it. Not that I don't, but even if I need it, I want to be giving it back at the same time. I haven't been there much lately, so it just makes me feel more sad not to be giving. I have worked since I was a child (on the phones) for March of Dimes, MD and others, along with doing fund raising for my kids' school, serving the homeless, etc... and THAT is ME. A bringer of sunshine and laughter, a cheerleader, a fund raiser, an advocate. When I can't be that to all of you - well, it makes me feel even more in a funk. So I just don't get online much during those times.
Now, since my surgery (endoscopic decompression/C-1 laminectomy on 4/2/10), I have had some struggles that have had me down, physically. That has been a good part of this right now. I'm not willing to concede yet, so I'm pushing on... but since I'm not feeling too good, I'm not online as much either. And the LAST thing I want to do is come on here only to crab!
SO! That's more about ME. I hope you understand.
I am so blessed to have all of you... and I know that... as sure as I know anything. And when I DO feel I need my chiari family, they have always been there. And I love all of you for that! That knowledge is NOT lost! :) In you all, I am truly blessed!
Wishing you blessings in return!
Lori
Exacty what pressure are you talking about? I have been on a slew of medications latley but those have not been tried. Sorry to hear you have been so frustrated. I know how that feels. Don't ever worry about being a downer. This site has given me a place to vent, get answers, and to share good news. It has been the best thing ever.
Jen
Jen
Well I know you don't really know me but I see nothing wrong with coming on even when you can't be happy- because I have found it helps. I come on alot and just complain- and no one makes me feel bad about it. I don't have any experience with what you are talking about, in fact I have NO IDEA WHAT you are talking about LOL, but I can't stand to see someone not come here no matter what. Good luck.
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