I apologize for the length, but appreciate advice and thoughts about my experience.


As some of you know, I have been suffering with no pain meds except OTC and no meds PERIOD for my IIH because I have no insurance. Note: I was diagnosed with IIH at the end of November, but the headaches started in September of 2011. My neurologist/headache specialist prescribed for me the following drugs: Diamox, Lamictal, Elavil, and Lasix. In total I was on these drugs for 3 months which didn't help me. Once I lost the insurance, I used up the meds I had and did not get any refills--this is why I have resorted to massive amounts of OTC drugs. I have not seen my neurologist since March because of the insurance situation and not being able to pay.

The last few days my pain level has been a 9-10. The kind of pain where I wish I were dead! In addition to the pain, my extremities (arms/hands) have started becoming numb. The numbness is obviously not from the Diamox because I haven't taken i since April. I also have had severe dizziness for days where I feel like I am on a carnival ride.

After much debate (because I cannot pay), I decided to go to a Emergency Room here in Florida.

I was taken back to a room in the ER and the doctor came in to see me. I told him that my head felt like a geyser which was ready to burst and my pain level was a 9-10....then I began to tell him my story, while crying because I could not help it.

I told him about being diagnosed with IIH and during the process of trying to explain the lumbar punctures and the experience that I have had during the past 11 months, he kept cutting me off and interrupting me.

Next, he mentioned that migraines could be an "underlying cause". (Keep in mind, by this time I have been in severe pain for a prolonged period of time). He then said, "Well we [the ER] are not going to do an LP, so what do you want from us? Do you want narcotics?" I replied, "I am in pain, so it is common sense that I want pain relief!" He then followed by saying I was having a panic attack! At this point, I had had enough of him talking to me in a condescending manner. I said, "Listen, I am not having a panic attack! I am in pain and it is not a F&@%ING migraine!" :quiet: (I rarely curse and when I do, it is when I am in the worst kind of pain.)

Here is the kicker....HE GOT UP AND WALKED OUT OF THE ROOM AND SAID, "SOMEONE ELSE CAN TREAT YOU!"

My husband and I just stared at one another and my husband got up quickly and followed him out and said, "What the hell was that? Have you never heard someone in the ER, in severe pain, curse? I want to speak to your supervisor!" He said, "I am the supervisor!" My husband said, "Well I want to speak to someone over your head!" They directed us to hospital administration. So, I had to GET DRESSED (while I am in excruciating pain) and go see someone in their Risk Management office [risk management for the doctors, no doubt]. After 30 minutes of being jerked around, I was led back to the ER and told that someone else would treat me (it was a physician's assistant, as we were led to believe there were no other doctors in the ER). I was also told by the charge nurse leading me back, NOT TO CURSE, to which I responded by saying, "Look, the ONLY time I curse is when I am in excruciating pain."

So, after being held up (I believe on purpose) for two hours or so, I finally got some pain meds and anti-nausea meds. Phenergan (anti-nausea) and Dilaudid. I was given a script to take home for Phenergan and a pain med called Fioricet (which I have never taken).

I believe I was treated this way because I had no insurance. The doctor treated me like a drug seeker and totally destroyed me emotionally. I have put off going to the ER for weeks and weeks because of the insurance problem and I went to the ER as a last resort because I was ready to walk in front of a truck and this is the kind of treatment I received.

(I cannot believe it. I am completely and utterly dumbfounded and emotionally distraught over this treatment at the ER.)

So, I received no LP to lower the pressure even though I told them I was a level 9-10 pain and prayed for death to get away from the pain!

As I stated, I am distraught and trying to hang in there until January when I have insurance.

I don't even know what else to say..... such a horrifying experience.

OMG I am so sorry. that is so awful.
unfortunately, doctors are socialized in medical school to not take emotional women seriously. he was rushed and didn't want to hear the story, and got frustrated with it. also, I think that understanding and management of IIH is probably piss poor everywhere. why would they not do a spinal tap? I am beginning to wonder if lots of people with migraines actually have IIH and are going around undiagnosed. this doc sounds like he is clueless and was being defensive since you knew more about IIH than he did. I would actually consider making a complaint to the medical board. I mean, it's not like he had to diagnose you with IIH, you came in with the diagnosis, with excruciating pain and the fact that you don't have insurance is more of a testament to just how bad it was that you finally went in. plus the numbness in your extremities. if you are having nausea it is even more concerning that your ICP should be brought down. why would he not give you some sort of treatment to address the ICP? if he had a child with a brain tumor in there with the same symptoms and he sent them home he would definitely get looked at for that. numbness in your extremities suggests pressure on your spinal cord; why does this not warrant immediate treatment? I would also be talking to the hospital about your bill. why should you pay to be abused and to be refused appropriate treatment? they should write it off. btw, Fioricet is a migraine medication. I would use that in your complaint because it's not a migraine and he is incompetent if he thinks it is.

I would call your neurologist in the morning, and tell them you went to the ER for severe symptoms and they refused to tap you or give you anything but pain meds. I would see if you can arrange a therapeutic tap thru the neuro office; they should be able to refer you. I can't imagine it would cost more than an ER visit.

I hope the medication helped a little.....
Deb

I'm sorry you had a bad experience. I unfortunately have been given every migraine med under the sun, but a lot of times they won't get past the migraine diagnosis until the meds don't work. I'd at least give them a try. I can't believe they wouldn't at least give you a consult w/ neuro dept..they usually can't wait to pass the buck! I honestly don't know what to tell you..as a social worker in Ohio, I've given you all the programs and sites that I know about in your area. If you couldn't find any assistance w/ any of them, then you have to decide whether not having the pain and symptoms is worth the debt. It sucks, but unfortunately there aren't a lot of options. I've had to start over more than once, but it's always been worth it for me..especially when I started losing my vision. If you're having issues w/ vision, I would start w/ that doctor..if vision's affected, he'll make sure you get LP. Hang in there!

I am afraid, I have to agree with Julie on this one. Obviously, the ER department in this hospital that you went to (I assume it is relatively small hospital) is not well equiped. You may just need to find a doc who will be willing to work with you, finacially, and just do it. You can pay off the debt $20/month. Follow up on all of the leads that Julie gave you. Make lots of phone calls and take good notes.

I would also see about having the bill written off. File that complaint (adds strength to your case) and be assertive but amicable.

Good luck.

Hi, Thanks to you all.

@Julie, I know you have tried to help me with programs, etc., in my area and I very much. Sometimes there is just so much you can do, but I truly appreciate your efforts.

As far as the ER visit goes, I do not know why they would not do an LP except because of the insurance thing. Yes, I did go to a very small hospital but surely they have to do LPs there for different reasons. I guess it was the insurance--that is the ONLY reason I can think of.

I did take the fioricet today and, guess what, I still have a headache!

I am definitely going to file a complaint with the hospital and medical board. The way I was treated is unconscionable.

As far as me incurring debt to get treatment, I'm not sure how I am supposed to do that. I don't have disposable funds to get treatment. I can pay a small amount monthly but I don't know of any doctor who would be willing to see me and take such payments (probably because of their associations with hospitals and hospital or medical association policies). Not to mention, the neurologists are not the ones who do the lumbar punctures.

As I stated, I am very grateful for the advice and the help offered. I will just have to survive somehow...

No, Neurologists are NOT the only ones who do lp's. I have mine done by the radiologist and not the neurologist. Pain clinics have radiologists or anesthesiologists who do epirdurals, using the same equipment (Fluoroscopy) and might be able to do lp's.
I know it is so frustrating to feel as though there is nothing that you can do, but unless you are willing to make some phone calls yourself and try to find someone willing to work with you (you won't know until you do try), our suggestions are not worth much. Besides, are you 100% certain that come January you will be covered, even for preexisting conditions? I thought that part doesn't kick in under Obamacare until 2014?? You may be putting this off with no end in site, and all the while putting your vision at risk.

My brother is on charity care in NJ. He gets no assistance for doctor visits, only free hospital care. He has doctors, at clinics, who see him for less than $40/visit, and he often pays them whatever he can per month until the bill is paid. There are compassionate doctors out there. You just need to do the research yourself to try to find one close to you, or you may have to travel a bit to get to it. Where there is a will there is a way.
I hate to sound so parent like, but this is frustrating to me, too.

Please, try to become more aggressive in your search for help with your local health care providers.

Thanks for your post. Let me first state that I do truly appreciate the suggestions offered and know that you whole-heartedly are trying to help me. I apologize beforehand if this response comes off as being disrespectful or unappreciative; it is not meant to be.

That being said...

What is frustrating to me is that you are implying that I am not doing anything. If anyone is frustrated it is me, for sure. I would ask that you please not state that you are frustrated for trying to help me because I am not helping myself and that I am "putting it off".

I have looked. I have called. I have not gotten anywhere.

I called my neurologist and the best they can do is offer me a 40% cash discount. I don't know about anyone else, but 40% is still a lot of money which I don't have. If I were able to work, then I could afford it, but like so many others I suspect, I have had to resign from a great career in education, because of missed work.

I have driven to some "charity" orgs and been told by them to my face that I don't meet the income guidelines because my husband makes too much money. In fact, I was told by one organization that actually is supposed to help people who don't qualify for medicaid but can't afford medical care, to go to the ER--which I did and was treated with total disregard.

I have even contacted other headache clinics in different states asking them if they are doing any trials that I could be involved with. I have written emails and letters to neurologists asking for help. Result: Nothing thus far.

What is truly sad is that I have considered divorce just so I can qualify for programs. Even more frustrating is that it would cost me $1000 minimum just to get a divorce, which would take approximately 30 days to be finalized. Keep in mind that my husband, if adding me to his insurance plan, has to do so during open enrollment in October so the benefits begin in January.

I have considered, even begged my husband to file bankruptcy (as suggested on another post) but my husband refuses to go that route. (Is that a problem with his priorities? Sure it is. But I cannot force my husband to file bankruptcy.) He simply does not understand (and I can't seem to make him understand) how much pain I am in. I have suggested he visit this site and others to read up on what others are experiencing. However, he works so much that he doesn't have a lot of time. Again, maybe a bigger problem that my husband does not seem to put a greater value on my health.

Additionally, if you re-read my post, I stated that neurologists DON'T do the LPs. I know that. Regardless, that doesn't help me because I can find nobody to do it because I have no money to pay.

I am still going to continue to look for someone to help me, because I want to live--even if it is not the life I had planned. I am trying my best to hang on in the midst of pain that makes me welcome death.

So, now you know that I am not just "doing nothing."

I really do know that you are all trying to help. I read each and every response and have followed up on some of the suggestions. Yes, I know it is frustrating when you are trying to help someone and it seems to be going nowhere. Sometimes that is just simply the case.

I am praying that I find someone who will help me soon. I will make it somehow because this is happening to me for a reason, even if I never know what that reason is.

Blessings.

I'm sorry it's been such a frustrating process, but I do completely understand! I was unable to work for a few years and had to move in w/ my parents, so I couldn't get any assistance because of their income either. It is REALLY tough, so just know that you're not alone!!!

I don't think bankruptcy or divorce is necessary, but I do understand your desperation. I'm just suggesting selling off some material things: electronics, jewelry, furniture, clothes, anything that may have value but you can live without. There's Craig's List, Ebay, and other online resources, so not as physically draining. In saying that I do still realize it takes work and you're untreated, but maybe there's a friend or family member that would assist you?? That's probably the easiest and quickest way to make a buck for doctor visits, meds, etc.

HIPPA insurance policy is another option. They are basically major medical, but would cover hospitalization, doctor visits, and medications. I'm not sure how long you've been w/o coverage, but pre-existing conditions may exclude you from coverage for a year or so..that's why I'm suggesting you try the cheaper version now. You can easily transition to your husbands policy in January. My policy was almost $300, but you can google HIPPA insurance policy to find a site that will estimate your costs. Yes, it's a lot if you have nothing..can't squeeze blood from a turnip, but only you know your limitations.

It definitely is more difficult to find a doctor or hospital w/o insurance, but I've never had a doctor send me to collections as long as I was working w/ them and making regular payments. I had one doctor that only took $10/month. I know you said the neurologist would do 40%, so was that up front payment or something you can make monthly payments to payoff?? Debt is scary especially when you've gotten to the point that you're even considering bankruptcy, but it will hopefully only be temporary. There are food pantries that give food w/o looking at income and that could free up some funds. I even sold blood plasma for awhile..you used to be able to give monthly, but I don't know current regulations. It's all completely crazy and unfair, but there's not a lot we can do at this point..honestly, it can get better and will hopefully just be temporary. It took a few years (and appeals) for my Social Security Disability to finally be awarded, but I was able to pay everything off and start a savings account.

If you want to PM me, I would be happy to try to brainstorm and find things in your area...hang in there!!!!

julie

Aww Jule,

Thanks so much.. I really appreciated that message. It felt like a big ..

To answer your question, yes they want the 40% up-front.

I really don't have anything of value to speak of that I could sell. I did try Ebay a while back and I couldn't sell a dang thing...

Here's a bit of good news....actually A LOT OF GOOD NEWS. I was awarded disability on the first go around. I just resigned in April from my job. I just got the letter saying I was awarded and that I have to be disabled for 5 months before benefits begin. The benefits don't start until November. I have already told my husband that every penny will go to my medical care!

I will keep trying and I will keep my chin up.

I will put my hope in the Lord every day. Amen!



Thanks again for the ""

it hurts me to read about your struggle for medical care. i feel very lucky to live in norway.
i got mentally ill when i was 13, and was hospitalized for about 7 years, and i have also been admitted to regular hospitals for many different things. i have never been able to work. but still i got monthly payments that keeps me going. and in norway you don,t need to pay anything for hospital care. it is totally free.
for medical care outside the hospital, you pay up to about 350 USD in a year. when you cross that line you get a card that gives you free care the rest of the year. prescription meds that you need for over 3 months is also covered by this.
Now i really realize how lucky i am...
angelmom: life is unfair, but i really hope that you get the help that you need and deserve.

Angelmom, that is AWESOME news!!! Hopefully three months of debt seems a lot more manageable and you're able to start treatment soon!

I know you posted that you understand we're just trying to help and I do hope you realize that is our intent. I'm so glad that you felt comfortable enough to post your frustration and keep coming back, but I hope you realize how much the additional information you provided in that post helped us to truly understand your situation. There really wasn't a lot of info about any progress you had made w/ suggestions, so it was very helpful..at least for me. I really think the reported frustration on part of members was not being able to help and lead you through it..it was obvious you were overwhelmed, but unclear what had been done. I'm so glad you clarified it and have been able to make progress. Please continue to keep us updated.

I hope you find some relief soon!
Take care,
Julie

OMG!!! I just cannot believe how some folks are allowed to practice medicine. I sickens me to think of them treating you or anyone else that way because of the lack of insurance. Shame on them. Karma is a B*&^* and what come around goes around. They should learn to treat people they was that they would like themselves or their loved ones to be treated.

I have been suffering for several months myself and due to the IIH am no longer employed after working since I was old enough to legally work. I just received a letter from my insurance company that my coverage is being terminated as of the 13th of this month. My main concern is not being able to afford all of the medication that I need that somewhat control the pain. I guess I'll cross that bridge as I get to it.

My doctors have been very good at listening for the most part. Only once did I feel my neurologist was trying to ignore the pain I was in. He appeared ready to give me a Rx and while telling me that I would need an LP. I asked for it to be done then to which he said, "it cannot be done now". I simply replied, ok then, I will go straight to the ED from here and have the LP done there. He then asked me to wait while he called the neuro PA and miraculously the PA said he would be happy to do it. My pressure was very high again and I needed a drain done. I left the hospital about 5 hours later feeling much better than when I went in.

Good luck and stay strong everyone.

Hello,
I just have to say that the treatment you received or rather didn't receive was dispicable not to mention the treatment they gave you. I am an ER nurse and I have never treated anyone like that!!! I would have fired the whole lot of them. However, I took a job in North Florida for about 6 months and the hospitals I worked in I wouldn't have taken my dog to. Needless to say I moved back to GA. I wasn't impressed with the medical care there at all!!!! I am so sorry hon. I know at least from a treatment standpoint as nurses we never look at whether a pt. has insurance or not before we treat them. We get them better and worry about that later. My parents don't have insurance bc my dad is a pastor of a small church so this story of yours really strikes a raw nerve with me. I am sorry again you were treated so badly. That facility should be shut down by joint commission for their lack of care and compassion for human beings!!!!! Big HUGS to you!!!

Relli, can't you get COBRA coverage? if so you should sign up right away!

I just got a brochure about COBRA yesterday. I am going to look into it ASAP. Today was a bad day but I absolutely need coverage. I will keep you posted.

Thanks!!!

Hi everyone,
Thanks for responding to my post. It is nice to know that everyone else here finds this treatment despicable as well!

Relli, I know the COBRA insurance will be much more costly than what you would normally pay, but it sure will be worth it. My recommendation is to ACT QUICKLY. :Good Luck I wish I had done that same thing, but I was under the illusion that I would be added to my husband's insurance much sooner.

Regarding the "treatment" (I use that term loosely) I experienced: Sadly, I know that this bad treatment is not just confined to ERs but by primary care doctors, neurologists, and other doctors we deal with because of this condition--especially when we KNOW that we KNOW more about the condition than the doctors (usually).

:shock:

It is my understanding that my husband can pick up coverage for us almost immediately since the family abruptly lost coverage due to my losing my job through which my whole family was covered. I will know for sure on Monday. If not and that info is somehow false. COBRA it will be.

Relli, I'd also look into a HIPPA plan..insurance for people w/ health problems that's much more affordable. I know you have your family to consider too, but my COBRA was over $800/mo & HIPPA just cost me $300. That's been about 10yrs ago, so I can only imagine the costs now. You definitely don't want to let anything lapse or you'll have to worry about pre-existing condition clauses. Good luck!

Julie

Thanks for the info Julie. Much appreciated.