Desperate In Indiana

First, I want to start off with a thank you to everyone on the forums. I have been a long time reader and have learned so much from you all over these last few months. I began experiencing chronic debilitating migraines back in April 2012. I have experienced migraines on and off my entire life, but they have never reached the level of being chronic or to the point where I have ever had to use the emergency room until this past April. These migraines have prevented me from enrolling in classes all year long. I am going to school to be a nurse and the migraines have only strengthened my resolve, but we have to get me better first it would just be impossible right now.

Since April I have had to use an ER between 20 - 30 times when the pain reaches levels of 7-8, the nausea becomes constant throwing up and dry heaves, and I start experiencing blurry vision. Most days I experience what I call a low-grade migraine usually behind my left eye extending all the way back to my neck but sometimes it is on the right side of my head. Only when the pain becomes very intense do they become bi-lateral. I have had an MRI without contrast and two CAT scans all clean except something called an "Empty Scilla."

I am having exceptional difficulty finding adequate care for my migraines and even my other medical issues. I have seen two general practitioners and two neurologists. One general practitioner would not do anything for my migraines since I was seeing a neurologist. The other GP tried neurontin (no change), then we tried Phenergen, Fiorcet (both kinds), and Sumatriptian injections. The phenergen helps with low grade nausea but not when it gets bad enough for an ER visit. The Fiorcet does not seem to do much for me, either kind, I have noticed no pain reduction or an aborted migraine, and the sumatriptian injectons initially knock me out and then I find myself waking myself up several hours later by throwing up with a very painful migraine and usually end up in the ER. After this last appointment and having two ER visits last month and telling him these medications were not working he still prescribed the same medication and had nothing new to try, basically ran out of the room after 15 minutes and did not address any of my other health concerns and wants to see me again in three months. I simply can not keep going on like this.

The neurologists I have seen, one is a migraine specialist, the other I was suppose to be setup with a migraine specialist when I was given the referral in the ER but the receptionist was more concerned with giving me an appointment with someone close to me even though they have migraine specialists in their practice. We have tried beta-blockers metoprolol & procardia xl. The prophylactic topomax that I am on 75mg now and have noticed no change at all and since my goal is to get back in school I do not want to go higher and start having memory problems. As for the triptians I have been on imitrex pills and injection, treximet, maxalt, and relpax all of them generally unsuccessful the maxalt may have once aborted a migraine and that is the extent of my success with the triptians.

I highly suspect that the cause may well be one of the psychiatric medications I began back in March. I have a rare condition called Prassad's syndrome that mimics Bipolar Depression/Mania which is a condition of my Hoshimoto's Thyroiditis (Hoshimotos causes migraines as well). I am on Lithium, Pristiq, and Seroquel. Both Pristiq and Seroquel cause headaches. However, anytime I see my psychiatrist he simply says it cannot be the medication and does not even put it in my medical file. The GP I am currently seeing is calling him to see if I can discontinue the Pristiq, but that is not acceptable I require some sort of SNRI. I am seeing a new psychiatrist in a few weeks so hopefully we can work out a solution. The problem in playing with the psychiatric medications is that I am experiencing 0 depression, 0 anxiety, and 0 mania except when I have a migraine that I have to go to the ER I get some anxiety that is usually controlled by benadryl and only start to have depression and hopelessness when I am treated poorly in the ER or the medication even in the ER does not work. It may not be the medications at all, I read a study the other day where migraines and depression/anxiety are co-morbid and the migraines commonly start after the depression diagnosis.

I have considered a migraine clinic, but I have Medicaid and from my research there are not any real migraine clinics in Indiana and getting Indiana Medicaid to pay for something out of state is nearly impossible I may have to suffer for years before that happens and Diamond does not take any kind of Medicaid.

Here is where I am asking for help. I cannot find any doctors that will aggressively treat my migraines or even have half an idea of what to do next. 10 minutes in an office visit that I spend weeks preparing for and thinking about and see you in three months is not going to cut it and I'm not going to get better. The emergency rooms are often tired of seeing me, it depends on who the doctor is I either get treated with total compassion and respect or I get treated with total disregard and have even been given medications that make me even more ill (droperidol). I never have any idea when I go into an ER if I am going to get better, get the run around, or treated like dirt and dismissed before they even ask if I feel better.

Does anyone know where I can turn to help in Indiana? I need a GP who is going to spend time with me try new things every month and listen to my other health concerns (I'm on 15 different meds and haven't even been able to bring up the tests I need and even refills with the current GP before he runs out the door). I also need a neurologist who is going to try different prophylactics and medication that works treat the pain and nausea so I do not have to use the ER as well I see many of you have a note saying you are diagnosed with chronic migraine and need to be treated accordingly. I think I can handle the issue with the psych meds on my own and get that figured out on if that is the issue, but in the mean time I have nowhere to turn to for help. If you are still with me, thank you all for your time and if you have any comments, help, something to try, a similar experience, or anything you would like to share it would be much appreciated. As you can see I am certainly, desperate in Indiana.

Teddtlove said...
I'm sorry. I can't help you. But I just like to let you know someone is here to listen. I would also like to know where I can learn more about Prassad's syndrome because I have bipolar tendencies and hypothyroidism.

Good to hear from you. Any kind of discussion of words of support are very appreciated, as we are all suffering from his horrible disease. The worst thing about Prassad's syndrome is that very few people have heard of it including psychiatrists and endocrinologists. It can affect people with hypothyroidism as well and not just Hoshimotos thyroiditis.

Here is a report in an academic journal which I have provided to all of the doctors that I see, sometimes they will actually look at it: http://www.ncbi.nlm.nih.gov/pubmed/22389997

This is a good one as well:
http://www.psycheducation.org/thyroid/introduction.htm

Angelic_Victory said...
It sounds to me like you may need to shuffle some meds around and take a more aggressive treatment for the migraines. The er is not the best place to get care because they only treat the here and now and don't care how you feel later. You really need a neurologist who is willing to listen to your symptoms with these migraines.
I'm surprised that they are giving you phenergren because my neurologist said most drs have quit prescribing it because it can do damage to your veins. Maybe ask for a different antiemetic since phenergren isn't working.
Most neurologists treating chronic migraines tend to prescribe antiseizure medications. I take one and has seriously cut down how many I get. So that may be a good thing to bring up to your dr. I suffered with my migraines for years before I finally found a dr that listens and treats my migraines seriously. I'm sorry you're going through this but its important to not give up.

Thank you for taking the time to reply. Not giving up and trying to keep hope I feel is the most important thing. I know if I could just find a fit with a GP, neurologist, and maybe even a pain doctor I would feel much more hopeful. I have found some good ER doctors, sure wish they kept office hours. I will keep trying, the problem with trying new neurologists is needing several referrals and this may or may not be possible. This bureaucracy is driving me nuts! I am not the kind to give up though I am sure there are doctors out there that can help me and take enough time with me, I just need to find them.

I am on the phenergen as both reglan and compazine are not options as they give me horrible panic attacks and Medicaid will only pay for 10 Zofran a month, not enough. Does oral phenergen affect your veins as well or is that just IV? When I am given it at the ER they just do a drip kind of like fluids so it does not irritate the veins.