Ever get frustrated?

Hi…Ever get down over this condition and symptoms??? I get isolated sometimes. I don’t like to make plan b/c I never know how i am going to feel…does anyone relate to this???

I am still not ‘myself’ after that med Diamox…made me majorly depressed. So hard to explain to others who have not experienced it.


I get to feeling the guilt and get all worked up when I am feeling down .

God Bless,
Lori

I isolate myself ALOT from everyone when I hurt… Up until recently, I was able to handle things much easier since surgery 6 years ago, But since the pressure headaches and other symptoms have started coming back I tend to just keep to myself… Noone wants to hear me complain and moan about my head hurting…

As for making plans… It does scare me… But life has to go on… and unless I am unable to function… I still try to make the most of it… But I do much better if its a spur of the moment planning day… That way I know exactly how I am going to feel… :slight_smile:

I also isolate myself. I think this is a normal response that we do. When you have been around others that just do not understand or want to understand: it is so easy just to shut down and keep it all inside. I find it kind of amusing that my family can be so dumb-found on something that effects a family member. I hear all the time that I am “faking” it because one day I cannot move and the next day I can. My favorite is when everything is fine one minute and out of the blue wham here comes a migraine and down and out I am for the rest of the day.
I too have stopped taking Topomax and Amitriptylin and Treximet. Treximet was working well for my migraines but about a month ago when I take it I get a shooting pain down my left arm that will not go away while the medication is in my system.
I am currently on ALOT of Ibuprofen, Xanax, Fioricet and Tramadol ( it makes me itch) and if the pain is too over-whelming Percocet.
I don’t sleep well at all and so my sleep is during different times of the day.

Oh here I go keep on rambling…but yes I too feel Isolated from alot of family and friends, but it is nice to have this group to help!

I have learned that unless you have Chiari, you do not understand the pain and suffering. I have been told by my family to “stop telling me about your headaches” , " just take a pill and come over" , and my personal favorite was " you get responsible
for your actions and take the consequences
for them. Don’t blame your headache on
me". What they fail to see is the stress they cause that attributes to the pain. This past year was extremely stressful, many life changing events, and a realization that some of my family lacks compassion. It was through actions of my sisters that I felt isolated. The more knowledge and awareness of Chiari , the less isolated we will feel.



Stacy Elaine Zimmerman said:

I also isolate myself. I think this is a normal response that we do. When you have been around others that just do not understand or want to understand: it is so easy just to shut down and keep it all inside. I find it kind of amusing that my family can be so dumb-found on something that effects a family member. I hear all the time that I am “faking” it because one day I cannot move and the next day I can. My favorite is when everything is fine one minute and out of the blue wham here comes a migraine and down and out I am for the rest of the day. I too have stopped taking Topomax and Amitriptylin and Treximet. Treximet was working well for my migraines but about a month ago when I take it I get a shooting pain down my left arm that will not go away while the medication is in my system.
I am currently on ALOT of Ibuprofen, Xanax, Fioricet and Tramadol ( it makes me itch) and if the pain is too over-whelming Percocet.
I don’t sleep well at all and so my sleep is during different times of the day.

Oh here I go keep on rambling…but yes I too feel Isolated from alot of family and friends, but it is nice to have this group to help!

Abby, thanks again. I will send that creed onto my family!

Abby said:

Teresa,I know exactly how you feel. It is easier to stay in and when you feel bad, not have to explain what is wrong.
Teresa Brumley said:
I isolate myself ALOT from everyone when I hurt… Up until recently, I was able to handle things much easier since surgery 6 years ago, But since the pressure headaches and other symptoms have started coming back I tend to just keep to myself… Noone wants to hear me complain and moan about my head hurting…

As for making plans… It does scare me… But life has to go on… and unless I am unable to function… I still try to make the most of it… But I do much better if its a spur of the moment planning day… That way I know exactly how I am going to feel… :slight_smile: