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.

I wish I knew how to help you. My best advise is to try going off of the medications you think are causing the problems. It is not acceptable to get blown off by your doctor saying that the medication is not the cause of the headaches. The timing is too close to disregard. Unfortunately I have learned the hard way that doctors don't want to believe that meds cause unacceptable side effects, and we end up paying the price for their arrogance. You need to either get him to try you on something else or see a new doctor ASAP.

Hi there,
So sorry, that you've tried so many things and not found much relief.
I am doing Biofeedback/ Neurofeedback and have found it to help a lot.
If it is an option for you, I would say it is worth trying.
I find it really helps me break the spiral/ cycle of migraines getting worse/ more intense.
Wishing you lots of relief soon!
SR

Where in Indiana are you? You might want to schedule an appointment with Kylene Huler - she is in Avon. She is really good about thinking outside of the box and was very willing to answer all my questions. I had a very bad experience at the St. Vincent's Headache clinic and would not recommend going there. I have also seen Dr. Li in Danville and felt that he was very knowledgeable and patient about listening to my complicated history. He and Dr. Huler were also up to date on current migraine research and treated me with respect. If you do go see Dr. Huler I should warn you that she looks and dresses like Elvira, Mistress of the Dark which can be a little distracting at first! Please keep us posted on your journey! Leslie

Hi you may think this sounds weird but I'm currently taking Topomax 200 mg a day and I have all the mental crazy memory side effects but I have an awesome GP doc and she thought about prescribing me Adderal to help me with the memory loss n concentration problems and you know what it does help. I'm very sensitive to many meds I have tried soo many Topamax seems to control my migraines a little but only at 200 mg not less than that. Also Amerge 2.5 mg helps me with the pain as well as Zofran for nasea and vomiting. I wish there was another way to help you, I hate when Doctors treat patients that way, I've had that problem many times, as if the pain is not bad enough you have to deal with a jerk of a Doctor. Good luck and dont give up!!

Jewishmother wrote:Where in Indiana are you? You might want to schedule an appointment with Kylene Huler - she is in Avon. She is really good about thinking outside of the box and was very willing to answer all my questions. I had a very bad experience at the St. Vincent's Headache clinic and would not recommend going there. I have also seen Dr. Li in Danville and felt that he was very knowledgeable and patient about listening to my complicated history. He and Dr. Huler were also up to date on current migraine research and treated me with respect. If you do go see Dr. Huler I should warn you that she looks and dresses like Elvira, Mistress of the Dark which can be a little distracting at first! Please keep us posted on your journey! Leslie

Thank you so much for this information, this is just the kind of thing I have been looking for. I have been searching four migraine forums and have looked back several years for information about Indiana doctors and have only found a little bit of information. I should have mentioned that I am in the Fort Wayne area, but I am willing to travel anywhere in northern to central even southern central down to Bloomington possibly to find care. Unfortunately, with Medicaid I am stuck with Indiana doctors only, but I am certain I can find care here somewhere. The worst thing about the GP I was seeing was I was sure he was the one and then all of a sudden he doesn't seem to know what to do with me anymore. I suspect I may not get much time in the doctors office as the Medicaid rates are pretty low.

I will certainly be checking out both doctors that you have recommended. That is exactly what I need, someone who will listen to my very complicated medical history and think outside the box and keep trying. I have also heard many poor reviews of the migraine clinic at St. Vincent's. I was pretty much left with the impression that it was a migraine clinic in name only and not anything like the wonderful clinics we hear so many have had success with, thank you for confirming my suspicions I will not waste a valuable referral in trying to go there. I will be a daily member of the board and hope to beat this and one day continue on and help others who have suffered from this horrible disease.

Migrainegirl wrote: I wish I knew how to help you. My best advise is to try going off of the medications you think are causing the problems. It is not acceptable to get blown off by your doctor saying that the medication is not the cause of the headaches. The timing is too close to disregard. Unfortunately I have learned the hard way that doctors don't want to believe that meds cause unacceptable side effects, and we end up paying the price for their arrogance. You need to either get him to try you on something else or see a new doctor ASAP.

Thank you for taking the time to reply. I agree I think that is one of my best options is to get off that medication and try another one and see if that solves the problem. If it is that easy then I will be so thankful! Unfortunately, psychiatrists say their number one job is always to try to keep their patients on their meds since the top cause of relapse is when their patients go off their medication. I will be making clear to the new psychiatrist I am seeing that a change must be made. The problem with stopping some of the psych meds is people have awful withdraws and it can cause even more health issues, I worry I may be hurting myself more by stopping them without medical supervision. Let us hope this new doctor will have a creative solution for me.

Summer Rain wrote:Hi there,
So sorry, that you've tried so many things and not found much relief.
I am doing Biofeedback/ Neurofeedback and have found it to help a lot.
If it is an option for you, I would say it is worth trying.
I find it really helps me break the spiral/ cycle of migraines getting worse/ more intense.
Wishing you lots of relief soon!
SR

Thank you for taking the time to respond. I have read about biofeedback before, but this is the first time I actually have researched it (looked it up on the Mayo Clinc web site). This is something I will mention to my two current neurologists who I meet with in the next two weeks as I would love to learn more about the process. I remember when I was experiencing a lot of anxiety always thinking that I could learn to control it myself my meditating or finding the proper way to relax. I am willing to try anything at this point and it is wonderful to hear this has worked for you. I will be posting in the future to let you know how this works for me.

I just googled if hoshimotas disease causes headaches, And found an interesting site. Are you allergic to a lot of medications? I'm allergic to lots of meds or highly sensitive that seems to be my big problem in finding a medication that works for me. I'm even allergic to Benadryl. But on this site I just read it says something about a low Cortisol level, effects patients that have hoshimotos dz, causes headaches, I see my neuro on tuesday I'm gonna show her the site and see if I can be tested for this and talk go her about this.

Angela0611 wrote:Hi you may think this sounds weird but I'm currently taking Topomax 200 mg a day and I have all the mental crazy memory side effects but I have an awesome GP doc and she thought about prescribing me Adderal to help me with the memory loss n concentration problems and you know what it does help. I'm very sensitive to many meds I have tried soo many Topamax seems to control my migraines a little but only at 200 mg not less than that. Also Amerge 2.5 mg helps me with the pain as well as Zofran for nasea and vomiting. I wish there was another way to help you, I hate when Doctors treat patients that way, I've had that problem many times, as if the pain is not bad enough you have to deal with a jerk of a Doctor. Good luck and dont give up!!

Thank you for taking the time to respond. I know so many have found success with Topomax so I hate to give up on it just yet. I have some time to play with, my target date to get back to school is next August but it could be delayed to next January of course my health is first and if I have to give it another year then so be it. So I am willing to try a higher dose of Topomax. I am like you, very sensitive to very many medications. Most doctors understand this and then I get the occasional jerk doctor in the ER who wants to use a med on my allergy list for my migraine. I get a horrible reaction to droperidol I get panic attacks, dsytopia, pass in and out of consciousness, and shake for about 10-12 hours and then the pain returns full force and I end right back in the ER (real nice med). Unfortunately, I do not have a GP who will prescribe me Adderal. He really did not want to prescribe me the Fiorcet with Codeine which isn't working anyway and does nothing for my pain. The neurologist I am seeing now will not prescribe anything that is controlled. I imagine it is new and he is protective of his license, meanwhile his patients suffer. I do not know about the second one I am seeing, possibly something like that would be a big help with the memory problems as that is simply something I am not willing to suffer through either.

I have found zofran works for me as well both the pills and through IV in the ER, sometimes I require two doses. I will also bring up amerge as that is a triptian I have not tried yet and I hate to give up on them yet, I would sure hope one of them out there would work for me.

Angela0611 wrote:I just googled if hoshimotas disease causes headaches, And found an interesting site. Are you allergic to a lot of medications? I'm allergic to lots of meds or highly sensitive that seems to be my big problem in finding a medication that works for me. I'm even allergic to Benadryl. But on this site I just read it says something about a low Cortisol level, effects patients that have hoshimotos dz, causes headaches, I see my neuro on tuesday I'm gonna show her the site and see if I can be tested for this and talk go her about this.

That is correct hoshimotos does cause headaches and migraines. That is part of what is so complicated about my migraines as it may not be any of my medications it could just be that I have been suffering from hoshimotos for 18 years now and I'm 29 around the time where migraines start to appear in a lot of people or get worse. It could very well just be a progression of my hoshimotos that even with thyroid medication is not controlled very well a lot of ups and downs. Be sure to have your doctors check you for any kind of thyroid or even adrenal problems as well and not just hoshimotos as they cause headaches and migraines as well. Hoshimotos is an autoimmune disease where your body attacks and destroys your thyroid, for me it has caused a few other endocrine disorders with my pituitary, hypogonadism (low testosterone), and a vitamin d deficiency. However, I have not read about a lot Cortisol level before. I will be sure to investigate that and talk to my neurologists and endocrinologist about it as well. There very well could be a link there as well, I feel it is important to be tested and investigate anything where there could be a link.

I am like you where I am very sensitive to a lot of medications. I am sensitive to reglan, compazine, droperidol, nsids, & torodol. Usually this does not cause me any trouble but I have had a couple of occasions especially in the ER where I give them my allergy list and they get upset and do not believe me. I even had one insist on giving me the droperidol after the awful reactions I have had and I felt so pressured I accepted and to put it mildly it was nothing but pure hell. I will never allow anyone to put that in my body ever again. Sometimes I explain what these medications do to me and they just look at me like I am from Mars, which leads me back to my original problem of finding doctors I can go to who will listen and understand my issues and be knowledgeable enough to know what works and what doesn't and what to try next.

My thyroid has not been affected yet, I had it checked a couple of months ago cuz I read that thyroid causes migraines. But when u mentioned hashis I googled it and I read that if you have a low cortisol level it can cause allergic reactions, hypotension, hypoglycemia, migraines, and more, which I have all those symptoms!! When I go in for an IV my whole arm is a big hive!! The last time they gave me DHE I went into SVT and AFIB. So u really got me thinking!! Cant wait to talk to my neuro on tuesday.

Angela0611 wrote:My thyroid has not been affected yet, I had it checked a couple of months ago cuz I read that thyroid causes migraines. But when u mentioned hashis I googled it and I read that if you have a low cortisol level it can cause allergic reactions, hypotension, hypoglycemia, migraines, and more, which I have all those symptoms!! When I go in for an IV my whole arm is a big hive!! The last time they gave me DHE I went into SVT and AFIB. So u really got me thinking!! Cant wait to talk to my neuro on tuesday.

Yes, I am so glad you mentioned that as low cortisol and thyroid issues go hand and hand and a lot of times it appears to go undetected. I went over a lot of the tests I have had done and it has never been tested. There is a good site for low cortisol just search google and type low cortisol and it is the first link to a site called stop the thyroid madness. I tried to link to it, but I could not because I am a new member.

I also have problems with DHE. For me it causes my heart rate to skyrocket to near 200 bpm!! I all ready have a high heart rate 95-130 bpm and when I have a migraine it goes higher. It is high because of the hoshimotos. It's really another medication that I cannot have. The last time I had it the doctor gave it to me even though my heart rate was high and then his shift was over and left and even though my heart rate was very high and my migraine pain was still a 7 they still dismissed me. I was very upset. Another time I just ended right back in the ER just a few hours later.

Wow! I'm the opposite my heart rate and BP is low. Even when I have a migraine they are low or they go lower, HR in low 50's n BP lower than 80/50 which is weird. I work with a cardiologist and he says thats how my heart deals with the pain.

Sounds like you have had many bad experiences with many doctors. Have you ever complained about them?

Angela0611 wrote:Wow! I'm the opposite my heart rate and BP is low. Even when I have a migraine they are low or they go lower, HR in low 50's n BP lower than 80/50 which is weird. I work with a cardiologist and he says thats how my heart deals with the pain.

Sounds like you have had many bad experiences with many doctors. Have you ever complained about them?

That is interesting, my heart is just the opposite when I have a migraine and especially are really bad one my heart rate and blood pressure skyrocket. I have been wanting to see a cardiologist as well do have some tests done and get my resting heart rate down as well, but the first GP told me simply to not worry about my heart rate and I have not been able to get enough time with the other GP to even talk about it. I'm just going to keep working at it until I find someone who will get me the care I need. I have considered complaining before as it sure can be upsetting. Some of the biggest hospitals do have patient advocates that you can file complaints with so I may give that a try. I guess I am more of the mind that when I am in the ER that the doctor is either doing to give me adequate care or they are going to look at my history and decide they are not going to treat me with the medication that works for me and that I am not allergic too. I imagine if I complain it will just make matters worse.

I have one hospital that use to give me great care and now because of one physician's assistant who thinks he knows it all I pretty much do not want to go back. You are right I should consider contacting one of their patient advocates and see what can be done about it. If I go in and he is there I can simply refuse his care and go elsewhere. I had a doctor at another hospital basically tell me not to come back for migraines...even though I am under the direction of my doctors to go to the ER when necessary. That is illegal, but what can I do? It's not like I recorded him saying it. This is a smaller hospital with no patient advocates or anyone to complain to. They have two marvelous doctors who give me amazing care and ask me what I need and run tests give me referrals and advice, one who gives me the run around and tries medication that I know will do nothing and his nurses get frustrated coming in every half hour for two hours to me telling them no it did not work while I sit there throwing up and in intense pain, and then the doctor who told me not to come back but he did at least that time treat me with the right medication, and a nurse who treats me well but did once give me a med on my allergy list before I knew I could refuse meds. I am trying so hard to stay out of the ER because while 75% of the time it works and I get great care the other 25% of the time I am treated like scum.

If I was you I'd push to be admitted to the hospital to switch your psych meds to see if that reduces the migraines, as well as stabilizing you on preventative meds for migraine (if needed), and finding abortives which work for you which could be used at home. What about flat out telling your psych doctor you need your meds switched, and ask how is best to do it (instead of asking permission)?

Sounds like you have complicated case (like me and many of us who seek out these boards out of frustration), and just need to find some doctors who are interested in getting you well. With the multiple meds you are on, you are very well correct that they could be causing or exacerbating the migraines, especially with your medication sensitivities.

There are some good doctors out there, but it can be tough. You are correct that insurance reimbursal rates are so low that they can't afford to spend too much time. Some have ways to get around this some though, and will book longer appointments, especially for certain complicated patients. Or, at the very least, ask to be seen weekly until you can get though your list lol. Patients who are not stable should not be waiting months for follow up.

It should be one month at the longest. I know some doctor's schedules just can't accommodate it though (which is another good reason to see another doctor). Keep trying until you make some progress! I look at each new doctor appointment as an interview. You want to see if they are a good fit, as well as not be too disappointed if they aren't. Best wishes.

tortoisegirl wrote:If I was you I'd push to be admitted to the hospital to switch your psych meds to see if that reduces the migraines, as well as stabilizing you on preventative meds for migraine (if needed), and finding abortives which work for you which could be used at home. What about flat out telling your psych doctor you need your meds switched, and ask how is best to do it (instead of asking permission)?

Sounds like you have complicated case (like me and many of us who seek out these boards out of frustration), and just need to find some doctors who are interested in getting you well. With the multiple meds you are on, you are very well correct that they could be causing or exacerbating the migraines, especially with your medication sensitivities.

There are some good doctors out there, but it can be tough. You are correct that insurance reimbursal rates are so low that they can't afford to spend too much time. Some have ways to get around this some though, and will book longer appointments, especially for certain complicated patients. Or, at the very least, ask to be seen weekly until you can get though your list lol. Patients who are not stable should not be waiting months for follow up.

It should be one month at the longest. I know some doctor's schedules just can't accommodate it though (which is another good reason to see another doctor). Keep trying until you make some progress! I look at each new doctor appointment as an interview. You want to see if they are a good fit, as well as not be too disappointed if they aren't. Best wishes.

Thank you for taking the time to reply. I have been attempting to be hospitalized for about 8 months now and have been unable to find an ER doctor who would do it for migraines. My thinking has been that if I could get hospitalized during one of my awful episodes I could get the doctors attention that we need to do more for me and get better care. The last ER visit I had was with the best ER doctor in the area he is from Chicago are familiar with Diamond and their methods. He was about to admit me but since the second round of meds worked on me he ended up dismissing me. He said I really needed a migraine clinic to figure out all of the issues with my medications and get me stabilized. Hopefully if I can find a neurologist and GP that will listen and provide the care I need we can start talking about a clinic and then I can start the process of fighting Medicaid to get them to pay for one out of state since there isn't one here in Indiana.

I agree with you about forcing the issue with my psychiatrist. I am seeing a new one at a place where I have had much more success in the past and will be very firm in letting them know our number one goal will be to find out if these meds are causing the migraines and if they are finding other options. It is an option that absolutely has to be explored. I hope they work with me because if they do not I may just stop all the psych meds on my own and I understand the withdraws are quite painful, not something I want to have to go through.

I like your approach as using each doctors appointment as an interview. One of the problems I have had is I thought I had found a great GP and all of a sudden he is disinterested and not willing to try anything new and that is a real disappointment having to start over again. I have some ideas of other doctors that I can try and will keep pushing on. I can see a new GP without a referral so that is no big problem, but trying new neurologists or getting in to see a pain doctor could be a big hassle. I may just try to find ones I do not need a referral for and pay out of pocket for the doctors appointment as those are not too expensive unless they require a bunch of tests and then I am not sure if I can go back and get a referral or not. All of this bureaucracy is driving me nuts, lol! I will keep fighting on until I find the right fit, I know they have to be out there somewhere.

I am so sorry to hear what you have gone through. I definitely think you are on to something regarding your medication. I had a similar reaction to midodrine which I took for POTS/neuro cargenic syncope. Once I discontinued midodrine, my migraine frequency improved for a few years. I now have to be very careful about headache side effects. Many medications like zofran can be a horrible migraine trigger for me.

My neurologist recently changed me from Effexor to Pristiq, because he believes Pristiq is better for nerve pain. (I could not tell a significant difference)

Did your doctor start the 3 medications all at one time in March? The only way you are going to find out is by going off of one medication at a time..easier said than done. Plus I have read that titrating off Pristiq/Effexor can be very difficult. I agree with tortoisegirl, hospitalization would be the safest way - especially given your diagnosis.

If I were you, I would write a letter to your doctor documenting the facts of your case with copies of side effects of the medications attached and any NIH/pubmed study you can find regarding migraines and those medications. I would state the number of hospitalizations you have had since you started the medications and request he change them in a safe environment (hospital). Since you plan on seeing a new doctor, I would cc the head of Medicaid and the physician reporting entity for Indiana. Or you could possibly have two letters - one with the cc if he does not cooperate and a letter without cc if he does cooperate. Additionally, take someone with you who is willing to be your advocate, parent or friend, to your appointment. When it's time for this topic to be discussed, make sure that person is in the room and is ready to stand up for you!

Feel bettter soon!

If you ever have a problem at a hospital again, tell them you will report them to the joint commission. It is the accreditation agency for hospitals.

Trach wrote:I am so sorry to hear what you have gone through. I definitely think you are on to something regarding your medication. I had a similar reaction to midodrine which I took for POTS/neuro cargenic syncope. Once I discontinued midodrine, my migraine frequency improved for a few years. I now have to be very careful about headache side effects. Many medications like zofran can be a horrible migraine trigger for me.

My neurologist recently changed me from Effexor to Pristiq, because he believes Pristiq is better for nerve pain. (I could not tell a significant difference)

Did your doctor start the 3 medications all at one time in March? The only way you are going to find out is by going off of one medication at a time..easier said than done. Plus I have read that titrating off Pristiq/Effexor can be very difficult. I agree with tortoisegirl, hospitalization would be the safest way - especially given your diagnosis.

If I were you, I would write a letter to your doctor documenting the facts of your case with copies of side effects of the medications attached and any NIH/pubmed study you can find regarding migraines and those medications. I would state the number of hospitalizations you have had since you started the medications and request he change them in a safe environment (hospital). Since you plan on seeing a new doctor, I would cc the head of Medicaid and the physician reporting entity for Indiana. Or you could possibly have two letters - one with the cc if he does not cooperate and a letter without cc if he does cooperate. Additionally, take someone with you who is willing to be your advocate, parent or friend, to your appointment. When it's time for this topic to be discussed, make sure that person is in the room and is ready to stand up for you!

Feel bettter soon!

If you ever have a problem at a hospital again, tell them you will report them to the joint commission. It is the accreditation agency for hospitals.

Thank you for the words of support and offering your experience as well. I sure hope I am on to something with the medication. If it is the medication and I go off of it and the migraines get better I am going to be so thankful! From what I have read Pristiq is just the active ingredient the body breaks Effexor down to so I am suspicious if it is even a different drug at all either. I know the European Union would not approve Pristiq as they said it was the same as Effexor, from my understanding Pristiq is just a patent extender so they could continue to bill people more instead of the generic for Effexor.

I did start all three medications at once the Lithium, Pristiq, and Seroquel so that does make it a bit more complicated. I agree that a hospitalisation could do me a world of good. Anytime that I require ER care I will continue to push for it and one day I may find the doctor/PA/or nurse who is willing to work with me. You bring up a great recommendation I have never considered before with getting all of my information together in one well written document and cite NIH/pubmed documents and include them as well. Provide these to any doctors that I see and hope that I can get one to take notice read them and work with me. I will get working on that right away, just a wonderful idea as I have all of this in my head and I think it would do a world of good. I also usually do go to my appointments alone but the ER I usually bring someone along with me as I typically require a ride to/from the hospital. I have read that doctors have a harder time writing you off or ignoring you if you have someone there to advocate for you. All great recommendations, thank you so much!

You really deserve the ability to get your life back.

I ran into the opposite problem, with my neurologist/pain doctor. While my neuro was treating me for occipital and trigeminal neuralgia, I was diagnosed with Ehlers Danlos Hypermobility (EDS). EDS causes a myriad of health issues, but for me it causes both chronic and acute joint pain, severe headaches, and dysautonomia/orthostatic intolerance. My EDS geneticist referred me to an EDS pain specialist who prescribed Nucynta for joint pain. Nucynta basically gave me my life back for all of my joint pain except for my headaches (because my headaches are nerve pain related).





My neuro had given me two rounds of nerve blocks which were successful. The second block worked almost 2 1/2 months, but then I had a bad headache and the third block made my headache much worse. I have never been in so much pain. Although my daughter's pediatric neurologist told me this is a rare side affect, my neurologist later insisted my headaches were due to Nucynta. He did not want to treat me unless I went off of Nucynta.

Since reading was a new headache trigger, I consulted a neuro opthamologist. I detailed my headache/Nucynta/injection history in a letter and was able to prove Nucynta was not the cause. I was taking Nucynta during the 2 1/2 months when I was headache free. So now my neuro has accepted Nucynta is not the cause.

I totally agree with you on Pristiq. When my prescription ran out, I switched back to Effexor. I cannot tell any difference. The neuro opthamologist is the doc who switched me. He also convinced me to try Botox which has worked so far.

My daughter has POTS/EDS and migraines. She was hospitalized for headaches so many times I lost count. She eventually had an occipital stimulator implant. All of those hospitalizations taught me how awful people can be treated at hospitals if you "push back". So I tried to be as professional as possible. My background is finance/accounting, but I have two sisters in the medical field -one is a pulmonary doctor and the other a CCRN. If my daughter's doctor was out of town (she is an amazing doctor) and my daughter was hospitalized, the medical care was very inconsistent. So if my daughter wasn't receiving good care, I had to ask my doctor sister to be
present during rounds. Sometimes just having my husband in the room made a difference(he doesn't know Jack about medical stuff), but he can be very intimidating.

If I can offer any advice it's to document everything you feel like may need to be clarified in writing. ie send an email to a doctor/nurse summarizing a phone call/office visit. "it was great to talk to you today...as I understand our conversation you are going to contact Dr. ---- regarding ----.". Also research everything but only provide NIH/Pub Med articles to doctors. Try to find more than one study and consider the size of the study. Try Google Scholar or Google med.

May you find pain free days very soon!