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Chiari Malformation Community
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Avatar universal

just came from hartford hospital

I just got out of the hospital. I had to get something for my headache... I didn't sleep last night and my feet was burning again. There was a doctor there who comes up to me & tells me you do know that your condition causes these problems... I'm like hello that's why I'm here so that I can't get something that's efective... I'm in pain so I had to come here.  So she looks at me and rolls here eyes.. I'm like OMG... damn just help me.... I'm crying I can't sleep my body hurts. Look at me the bags under my eyes where huge I wanted to sleep so bad... anyways I was given reglan & fioricet... and what can I say except the headaches are put to a stand still for now. I'm very greatful... I almost went to the wrong hospital middlesex... I say this because guess what two - four months ago that hospital took an MRi.. and ignored completely what was going on with my brain then I had a nurse give me advice. Maybe I should see a therapist... had they looked pass the insurance that I have & just did what they are there to do. I could have been spared some pain & confusion.. at one point I really thought that I was crazy and I started to just give up on finding out what was wrong with me...
6 Responses
620923 tn?1452915648
COMMUNITY LEADER


Sorry u had to go thru that, but I hope u get a good nights sleep....I hate those sleepless nights....

  and I pray the meds continue to offer u relief : )

     "selma"
992677 tn?1537668903
:-/ Ditto selma... sorry you had to go through this again.

I'm glad you recognize that you're not crazy. The medical world just really doesn't understand CM as a whole. And you are correct if we are all being honest it wouldn't surprize me to find that many of us have been to the point where we wondered if maybe we were just going nuts. I've been there more than once. Not a good feeling.

Anyway, I'm glad you at least recv'd some relief.

CW
1457748 tn?1317575165
I know exactly what you are saying about the Ins. I feel the same way. I feel like I am treated differently because I am on Gov. Ins. I am so thankful to have the Ins. because without it I wouldn't have anything and wouldn't be able to be seen at all, but at the same time I feel like I'm treated as though I'm some lazy good for nothing that has nothing better to do then dream up all these symptoms and run around begging Dr.s to listen to me. I am happy to say I finally feel like I am on the right road, but it's still so bumpy. I would do anything to be able to be seen by a real specialist that understands that this condition is real and it's symptoms are VERY real!! At this point I am very limited on choices as most specialist will not accept this Ins. because it pays so very little. I'm happy you were finally given something to help with your headache. I wish we weren't stereotyped and put in a box, but unfortunately that's the way it is and until more awareness is brought to this condition I'm afraid it is going to continue to be this way with most Dr.s anyway.
Maybe this is selfish of me to say, but if some A list movie star or famous music artist or Athlete were to be DX then maybe bringing a famous face to this condition would at least get it heard of by the general public and therefore usher in the "want" to have more research done. JMHO
1690602 tn?1306714071
Hi tumble,

I'm so sorry you had to fight so hard just to get the pain medication you needed. Why are healthcare professionals so reluctant to prescribe these things: is there a secret black market for fioricet?

I was on OTC acetaminophen - an ineffectual 3g/day - for about three weeks of chronic headaches. They fed me some corny-a-- analogy about "your brain's natural 'check engine' light" and how relieving the pain would prevent a proper diagnosis. Last week I schedule a neurosurgical consult and the earliest date I could get was mid-June, so my PCP "caved" and prescribed...wait for it...naproxen. So here I am months out from any possible treatment, assuming this surgeon deigns to operate, with a worthless pain reliever. Furthermore, (a) the naproxen will eventually cause GI irritation and become unusable, (b) extended naproxen use causes withdrawal headaches, and (c) I do worry that the pain relief (however marginal) will interfere with the NS consult. I hope you don't encounter these problems with the cocktail prescribed to you!
Avatar universal
The only medicine that has helped my daughter at all with true relief was given to her in the hospital by IV...Turadol....on a scale of 1-10 she was sitting at a8 or 9 and within 2 hours of this she said it was a 1 or 2! It was wonderful to see her without pain. But unfortunately you cannot take the IV home with you....the pill form of this did nothing for her. We were back to square one.

so sorry - I can't imagine what it is like to feel like your head is just going to blow off the top of your body. That is what my daughter says. Things are alittle better at this time, she's at about a 5-6 most days, going up to a 7-8 every few days. Still not good.
Avatar universal
Thanks guys
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