First, I would make sure that these are migranes. Quite often members of the support group I belong to have had hydro related headaches misdiagnosed as migranes. Sometimes the symptoms can be similiar--light & hearing sensitivity, nautiousness, etc. I've also had that happen, but I don't have migranes, so I knew that wasn't what it was. But I've had medical professionals refer to them as migranes when they should know better.
You might also want to find a neurologist who specializes in migranes. My former neurologist had a lot of clients who DID have severe migranes. But I was fortunate, he knew the difference.
Hydropr61
elana_schwartz <elana_schwartz@...> wrote:
Thanks Joel for your email. Yes, they are very annoying (and painful at times) yet I have continued to go about my life. I've always had headaches somewhat - and I'm not sure if I've just paid more attention to them since my last revision 2 years ago (I had 2 within a 3 week span) or if they've gotten worse in terms of migraine symptoms. The last time I was at the neurologist he said that i was suffering from chronic headaches with the key of trying to make me more comfortable - which some days I don't find easy. I have had a total of 7 revisions since my shunt was first placed when I was 3 weeks old... I have had 1 infection -
which was why of all my revisions i had 4 within a year and a half span. Still, I've managed to graduate college, graduate school and now work full time.
Elana
--- In hydrocephalus@yahoogroups.com, "Joel Hug" <joel@...> wrote: > > Elana, > > I sympathize with your migraines. I had one that lasted for almost 4 years when God > healed them one night almost 3 years ago. Without knowing your beliefs, can I pray for > your healing? I have congenital hydro and went through 3 surgeries during a 2 year period > while I had the migraines. > > Joel > > --- In hydrocephalus@yahoogroups.com, "elana_schwartz" <elana_schwartz@> wrote: > > > > Sorry guys but i decided for once I need to vent .... > > > > I've
had such a hard 3 weeks with really bad headaches - where I've > > had periods at work where I've had a hard time concentrating. After > > seeing my neurologist yesterday he decided to increase the Neurontin i > > am taking as a "preventative" medication to try and cut the cycle of > > getting these really bad headaches on a daily basis. These headaches > > had gotten so bad that i left work 2 hours early one day and took off > > another day. Luckily, they are really understanding at my new job and > > my chief of staff actually know a bit about hydrocephalus and shunts > > when i told her. > > > > My appointment at the neurologist yesterday, made me feel a little > > better in that he said that my shunt seems to me working and the key > > is to try and minimize my headache pain... but he does feel that the > > chronic headaches are related to the
hydrocephalus but you don't > > always want to play with the shunt he said (unless it's clogged or > > malfunctioning). In the meantime, we've increased my headache pills > > as i said before and i go back for a follow up in 6 weeks and have to > > get a dreaded MRI again beforehand (just to make sure that the fluid > > in my neck is no longer congested). > > > > Still i hate the headaches and they have kinda put a damper on my mood > > and willingness to be as active (when these headache hit) > > > > Thanks for the vent! > > Elana > > >
Sorry guys but i decided for once I need to vent .... I've had such a hard 3 weeks with really bad headaches - where I've had periods at work where I've had a...
Elana, I sympathize with your migraines. I had one that lasted for almost 4 years when God healed them one night almost 3 years ago. Without knowing your...
Thanks Joel for your email. Yes, they are very annoying (and painful at times) yet I have continued to go about my life. I've always had headaches somewhat...
Wow, this email came at a really eerie time. See, I too, have been suffering lately with migraines more often than not. They are frustrating to no...
Hi there, I mostly lurk on this list because my daughter has congenital hydro due to some other medical diagnoses. I think I accidentally deleted a couple of...
Elana: First, I would make sure that these are migranes. Quite often members of the support group I belong to have had hydro related headaches misdiagnosed as...
hi Diana, That is what my ns told me that i was having migraines. But when i had an icp motoring study my icp went up to 60 at times and while laying flat it...
Laura: You might want to go to your neurologist & tell him what is going on. While a lot of people have nothing but negative things to say about neurologists,...
Diana & Laura, I have been to my neurosurgeon (last appointment was last August) and he confirmed that it is difficult for me to tell when i am getting ...
Thanks Jenny for the suggestion. I've actually already tried Topomax but stopped it after a year - it made me too tired to the point that i felt "doopey"...
there has to be soemthing to kill these headaches. im gunna go insane before im 30 for crying out loud! ... Topomax ... that i ... would ... August) ... ...
Hi- My name is Jill, and I have had over a dozen surgeries and revisions. I have Dandy Walker Syndrome. I am the mother of two, and am married. I suffer ...
Jill: Hi! Have you asked your doctor about seeing a neuro-opthamologist (sp)? Someone with that specialty might be able to address your eye pain & some of...
Diana- Thank you for the information. I did in fact go to SF and see one at UCSF, and that was when I was told that I no longer had peripheral vision in my ...
Jill: One of the members of the hydro support group I belong to has had lots of problems, over the last several yrs, w/her programmable. She had pressure...
Diana- Thank you for believing me ! A lot of people don't. All I ask is that the pain go away ! My life on a daily basis is hard. It is a chore to even ...
After being on this list for a few years, I cannot understand why surgeons keep putting those programmable things in peoples' heads. Apparently the ...
psincer9:  One of the major reasons is that, in theory, there isn't nearly as much surgery w/programmables. If there is a need to change the settings, it...