Tuesday, August 10, 2010

A New Drug - A Bad Hospital Visit

For the first time in about a year, I have the capacity to make a reasonable thought in a short period of time.

This of course is thanks to the new drug.  Mind you, I never know if side effects are going to be enough to do me in!

So far with Modafinil I have noticed:
  • Nausea
  • Vomiting
  • No appetite
  • Hot flashes
  • KILLER Headaches
  • Constant Diarrhea
Just what everyone wants to hear right?!?! Hahaha.

However, on the plus side I have noticed:
  • Increased brain activity
  • Coherent thoughts
  • The ability to read more than one sentence! Right now - Milan Kundera's Immortality!!!!!
  • The ability to walk more easily (although it only lasts briefly!!)
It seems crazy to have to play so much with my brain chemicals to be able to borderline function.  I have the ability to go test for a job on Wednesday, but I think it may be too soon for that. I am still not getting the full half-life of the drug, and my side effects are too volatile.  

Sometimes I wonder if this would allow me to get back in the workplace, but I still have my doubts.  HOWEVER - I could always sit at home and take cold showers every twenty minutes and maybe churn out something that someone might want to read!  Exciting idea to me for sure!

This drug is actually the first thing I've gotten excited about in a long time.  It's a tiny glimmer of hope to at least be participating in the lives of my family, boyfriend, and friends.  

If only people could understand just how debilitating chronic illness is - especially the ones that the doctors have very few ideas on how to treat!


Update: I spent from 1 p.m. until 5 p.m. bawling in pain from the worst headache/migraine thing I had ever felt in my entire life, as well as intestines which wouldn't stop cramping.

I went to the Emergency Room around 5:30 p.m.  I was visibly crying and in excruciating pain in my head, intestines/stomach, and leg.  I was first visited by a student doctor, who was sweet and very thorough.  He, however, could not help my pain.  Took almost 40 more minutes for the next doctor to come see me.  Briefly he scanned my chart, flashed lights in my eyes and scolded me to force them open when I was visibly shaking from pain, and then left me with a 1 mg Ativan and an intramuscular shot of Tramadol. I was treated like a cheap drug addict as soon as I mentioned my medication and my diagnoses.

I was then proceeded to be ignored even though the treatments didn't work.

It makes a mockery of our health system.  Disgusting.

Has anyone else had this kind of treatment??



Toni said...

Oh, Annie. I'm so sorry about this. Yes, I've had this kind of treatment. ER's can be the worst but you had to go. It's a no win situation. I hope you're home and resting now.

Take good care.

Selena said...
This comment has been removed by the author.
Selena said...

I went to the ER with my first massive migraine. I had had the headache for 3 days, getting progressively worse, by the time I went there. I was given morphine IV push. The nurse explained to the nursing student with her that it had to be pushed slowly or it would cause pain.

After the first shot, I was still in pain so when I was offered another injection, I said yes.

That's when the attitude started.

Without the nursing student present, the nurse pushed the second dose in straight away, ignoring everything she said to the student. I should have said something, but I didn't because I didn't want something even worse to happen...

Needless to say, my arm hurt for several days afterward...

Anonymous said...

I hate that this happened to you. Before I was diagnosed I went to the ER because of extreme weakness and confusion. When my blood work came back it showed that I had low potassium. The ER doctor accused me of being a drinker and that I shuuld go home and get over my "hangover". The next month I crashed and ended up in the hospital. He was an ass.

Wendy Burnett said...

Oh, yeah! 13 hours in the ER before I was seen, then 5 days in the hospital with nothing for pain.

Here's the rant: http://transformyourchroniclife.com/wordpress/2010/07/14/hospitals-unfamiliar-doctors-and-fibromyalgia-whats-your-experience/

NinaYvette said...

Hi Annie,
My name is Nina and I have to say unfortunately, I feel your pain. I have SLE and ITP and am prone to extreme bleed outs from time to time. My latest incident happened in May of this year when my doctors office mistakenly informed me of my platelet count. It was a 12 and I was told it was normal (normal being above 150) so I started bleeding from my nose profusely and rushed myself to the E.R. Having frequented this particular E.R. several times in the past, I had a history and relationship with the doctors on call there and they also had access to my regular medical records. I was first attended by a resident who had no idea on what to do to stop my epistaxis. So he summoned a nurse who made a type of pinching mechanism out of tongue depressors. That stopped the bleeding for about 20 minutes. When I started bleeding again, I was then visited by an intern, a resident, and the ER doc on call and they all looked at me as though I were the Elephant Man. The 3 of them stood there talking amongst themselves for 10 minutes while I sat with heaping mounds of red liquid running from my nose. It was so bad that I was even coughing up blood (overflow from my nose)Finally, the ER doctor informed me that I was to have "nasal tampons" inserted in my nose. And again, as if I weren't there, the resident shouted out "Can I do one?" Before I could even object, he had his hand on my forehead and was shoving the cotton contraption up my nose. (roughly mind you).He did not even ask me if I were okay with this. 12 hours later, I had a horrible fever, swollen sinus cavities, blazing migraine and massive fever spikes. I spent another 28 hours waiting in the ER for a hospital bed because I was being admitted only to find out that I had somehow contracted a staph infection ( nasal source of staph)I was told that the packing was to stay in for only 24 hours, they were left in for 4 whole days!!! So after a 15 day hospital stay, I got a second opinion from my ENT and he told me that the nasal packing was inserted too far and that I should have been put on an antibiotic immediately after the decision to insert the packing was made, (mind you, I didn't get any antibiotics until 3 days AFTER the packing was inserted) And to top it all off, my septum is now completely and totally destroyed and deviated to the left. ALL due to the way my nasal packaging was done. So after my labs were mishandled, my 40+ hour ER visit and my lengthy hospital stay, I say some doctors DEFINITELY need there licenses revoked!!!! They don't seem to understand that there is a difference between a patient and an experiment.

Nessie said...

I'm so sorry you had to go through this, Annie. I saw it with my husband -- they only listened to him when he was literally screaming with pain. Turns out, he'd thrown a clot after surgery and had an abscess. It still sucks, though! Sends positive thoughts and vibes your way.

Voiceless Wonder said...

When my voice and lung issues arose, after seeing my X-rays, my family Dr told me to go straight to the ER. Where I waited 15 hrs. I couldn't breathe nor speak. Upon seeing triage nurse, se mimicked how I was speaking and said she could talk like that too if she wanted. My husband just about decked her. She was the first in a long list of Drs over 6 years that said it was all in my head. That I could speak and breathe if I wanted to. Sure I could. It just took the help of 2 immuno-suppressants. I'm still scarred from the experience. I had pneumonia and refused to go to Dr for fear no one would help me. Almost ended up on a respirator due to fears from past experiences.

Diana Lee said...

I'm so sorry you were treated like crap. I have had some bad experiences, which makes me so thankful for the good ones. People who treat patients that way have no business practicing medicine.

Anonymous said...

Oh Annie, my heart goes out to you. I have had migraines since I was a little girl and they knew why until recently. I have constricted vessels in my brain and when my cpk or sed rate goes up, so do my migraines. I too was ignored for many months when I had to go to the ER. I then found out even more reason for the migrains was root nerve compression/damage in my cervical spine. I had crushed my C7 and C6-C4 were badly deteriorated. From then on, my spine surgeon put a standing order in my records "as needed, 50mg demerol/100mg noraflex for immediate relief" I only had to use the cocktail 3 times but boy if it didn't snap the heals fo the doctors in line quickly. As it turned out, my C5 and C7 root nerves are permanently damaged but I'm on constant meds for muscle relaxer and pain. They are still ever present with the slightest wrong additive (lack of sleep, too much chocolate, stress etc.) but I manage them better.

Feel better because I know first hand how bad they can be. Best of luck with the new meds. Maybe the side effects will back off soon. Gentle hugs. Tazzy

elisabeth said...

This attitude horrifies me, and makes me so angry at people who do try to cheat the system and make it harder for those who really need the care. I do hope that the side effects start to even out so you can enjoy the benefits of the new treatment! *hugs*

Dawn said...

It's such a shame when we feel like we can't go to the ER, but I have actually been told by my urologist to expect this type of treatment. (I have IC also).

I am absolutely terrified to go now, with fibro pain or IC pain because yes, they automatically assume that I'm a drug seeker as well (even though I am not on ANY narcotics - doesn't matter apparently).

The saddest part of your story to me though is that it's obvious you were having a severe reaction to a medication and you still weren't treated fairly or right.

Unfortunately, you are not alone. I hope you are feeling better today.

Maija Haavisto said...

I've never ever heard of a single person who has got non-horrible care at a Finnish E.R. and as I maintain a Finnish forum for people with CFS/ME I've heard quite a few E.R. stories. :-/ That's stopped me from going there e.g. when I was severely dehydrated due to hormonal problems, had massive arrhythmias as a result and could have really used IV fluids...

Dominique said...

Annie - If I were close by I would come by with tea and a huge hug. I am so sorry. Errr! I just had my own experience which I posted on my blog. This seems to be a global shift - this...dismissive attitude.

I actually had my 'doctor' ask me if I wanted to stay in the hospital. Like who would even think of wanting to stay in the hospital! Especially these days! Geesh!

Sometimes, I wish WE could put THEM in the ER and let them see what it is like from our perspective!

I'm glad you are seeing improvements although the side-effects are really alarming for me. Especially those headaches.

Please be careful and take care of yourself. You are really special to me!

hugs and love!

KD said...

OMG what a horrible ER experience.Annie my heart goes out to you. (hugs)

Sue Jackson said...

Oh, Annie, I's so sorry you had to endure such horrible treatment at the hospital.

It's great that the new med seems to be helping - I hope the side effects will mellow for you so you can experience its benefits.

Thinking of you -


Raven/Missy said...

Yes I have had similar experiences in the emergency rooms here in the USA. I will not go to an emergency room unless I absolutely have to (example: major chest pain, or severe withdrawal I can't control otherwise) because as soon as they read that I live with chronic pain and take opiates to control it they treat me like some piece of crap. I've had doctors call me all kinds of names and it is devastating every time it happens. So I just don't go.

I am so sorry to hear that you have had to go through such a horrible visit. I hope the side effects stop soon!

Anonymous said...

Unfortunately the migraine is a freaking side effect from the modafinil. I have taken nuvigil in the past and found it helps "some" but does have some side effects. The headaches do get better... but there is NO excuse for the treatment given to you in the ER. So sorry that happened to you.
hang in there and talk to your dr who prescribed the med.