Extreme head pain & doesn't help with the heart issue

[xmelax35]

Hi! I posted in the heart section too and did rec'v an answer there but since have had other issues.  This is not heart related but could be.  I have arnold chiari malformation type 1. I did have surgery 2 years ago.  Since then it has become worse (actually several months after the surgery). My last MRI was a year ago (my local doc is not from cleveland but I have seen them there).  A doctor there suggested another surgery bc of what he read on the results and my symptoms.  Well my local doc is against right now I guess...and my headaches only get worse. The pain starts in my neck and travels up into my head. I do have a small pituatary tumor (but they say not very big the last time). I am at my wits end. The pain is so great that the meds not helping..and I feel like vomitting and have. I have been thru so many meds to try (I am senstive to a lot of them). Treximet/relipax are awesome! I take treximet now but I am out.  The pain in my neck is something awful! I have vicodin but I have not taken it - as I didn't want to take it (I try not to) but I do know that since I tend to do that - wait until the pain is extreme - the vicodin does not work. It will work if I take it b4 it gets to that point...but I hate taking it - but again only thing that works and I am not so sensitve to so far.

Anyway, I am at a stand still.  I can't take it anymore and my local surgeon where I live said it looked fine and it is not - as the doc at cleveland told me once. I have another appt with the local doctor in a few weeks bc I am in so much pain. I have symptoms that could go either way with the heart condition or with the head pain. But with my head I am now experiencing Soreness again (happens sometimes but has been awhile since) under my head - the skull area - a lot of soreness - it is not on the outside but on the inside along with sometimes itching that is on the inside and not the outside - the itching thing is weird. I have bouts of no feeling at all in my skull/scalp area - in which is why when I was burned all over my head badly in November by a hairdresser - I did not feel it until much later and looked and felt the burns!! long story there. I don't know what to do. Hope this was not too confusing.

[Dr Santos]

Hi,
Dizziness and  sensation of being lightheaded are indeed associated with orthostatc hypotension.  The cause should be determined for proper treatment.At this point, pain management is important.  If the vicodin does not work, inform your doctor about this also to change your medication. Your neurologist and cardiologist should be communicating to determine what is best management for you. This whole thing may be giving you too much stress and anxiety and you may need to take something for that also. Talk to your doctor about this and discuss each symptom that you feel. Take care and do keep us posted.

[xmelax35]

p.s. yes my scalp has a lot of soreness - pain underneath it and also has sometimes no sensation...i will have it and sometimes i will not. It just happens sometimes.  It is so strange.

[xmelax35]

Actually a week ago I went to cardiologist (Cleveland) and I have the king of hearts monitor in which I had to empty to catch some new stuff and by emptying I had to not send over the phone because unfortunately we only have a cell phone so I have to go somewhere else and empty :(  I have been feeling awful and the really awful day (my monitor was filled up and I had no where I could unload) so I couldn't record.  Put it this way - I felt so bad I was afraid to go to sleep in fear I wouldn't wake up. This has happened 3 times within a week.  I felt so bad that I thought I was getting sick - my heart makes me feel this way sometimes.  It was going and going and felt strange - along with pain earlier in the day in my upper left chest and all the way down my arm and shoulder.  It was awful.  

I was only told about having the orhotstatic hypotension - actually those were not the words used to me - my cardiologist is sending me to a specialist who deals in the area, another cardiologist.  So I guess it is really not heart related. My heart rate goes way up (sometimes has hit as high as 200 bpm) and it also goes waaayyy down too.  Mostly it is tachyardiac.  My bp goes way down! they say the blood is pooling into the legs.  So guess it really isn't a heart condition. More testing is to be done I guess to see what else is going on.  Also when I walk I get really bad numbness in my legs - both of them, tingling on my feet - pins and needles, sweaty hands and feet.  Sometimes more. I have a ton of symptoms.  I just want to feel better!  I get dizzy and lightheaded.  Just awful and it is only getting worse as this time goes on.  The pain I get in my legs is something awful too! It is not RLS.  I get it all times and I don't have an uncontrollable urge to move them, lol.  Anyway so much pain so many symptoms.  I am not sure weather to ask my neuro if he would recommend another chiari surgery and see if that relieves my sypmtoms and if it doesn't then it would be my cardio issues??? All I know is that I get scared and really scared.

[Dr Santos]

Hi,
How are you? Can you elaborate on your heart condition? If there is no sensation on your scalp and a lot of soreness, you may need to have this checked by a neurologist. However, if you also have a chiari malformation, regular follow-up i important. And if your medicines do not help, inform your doctor about this. You can also consider complementary and alternative medicine such as biofeedback. Hang on and do keep us posted.