I wanted to start this new thread for a couple of reasons. First, the MHNI inpatient thread was getting quite lengthy. Second, and more importantly, I am no long in the inpatient program. The image of walking along sand dunes comes to mind. At the crest of a dune is something new.
So, here’s to the beginning of moving forward relatively fresh out of MHNI’s inpatient program.
Definitely more to come. Please feel free to post questions, comments, your own experiences, etc.
I preface this with a note that I have a horrible migraine after a couple of consecutive good days.
For the benefit of those who may not have read any of the posts on the MHNI Inpatient thread allow me to quickly summarize. I recently spent two weeks in the MHNI inpatient program at Chelsea Community Hospital in Chelsea Michigan. I have been out of that program for a week (last week) and a few days (this week).
The intensity of the migraines has, prior to today, definitely decreased. What was near or at the top of a one to five pain scale has been running closer to a three. The frequency, however, has not dropped, still daily at this point.
So, Monday and Tuesday of this week were the first two days of returning to work. Monday was okay and Tuesday was a bit better. By this I mean the migraine was tolerable and I was able to function at work.
Tuesday evening the migraine started to increase in intensity. I countered with a rescue medication (Lyrica). This morning I awoke to that pleasant sensation of immediately being aware of a migraine at the top of the scale.
Having provided a bit of context let’s move on to where to go now. The two week inpatient program was whirlwind of medication changes and procedures, like a variety of nerve blocks. The topic of this post is where I am heading… What’s next?
I have follow up appointments with my outpatient neurologist, the “nerve block” physician and the psychologist on the 11th of November. My plan is to be as prepared with questions, comments, observations and suggestions on that day.
My current dilemma is trying to discern if the relief I have experienced up to today has been from medication changes or nerve blocks I received while inpatient. I suppose if the intensity rises and stays risen one could make a conclusion that it was the nerve blocks that brought about the relief. If the intensity drops tomorrow and stays in that decreased range one might conclude the medication is the driver of the relief.
One of the many frustrations of having a condition that is not understood… Treatments are basically “guesses” backed up by evidence of effectiveness in “similar” patients. So, when it comes time to make decisions about next steps, well it is a bit of a crapshoot. I just hope it does not come up “snake eyes”.
In conclusion, being a person who utilizes Microsoft’s Excel as a tool daily for work, I am thinking about creating a tool that will allow me to track medication changes, procedures and migraine intensity. Lining up such data together might make for better analysis. Today is not, however, the day for that. In fact, I have to end here because looking at the bright (set on lowest brightness setting) screen is making things worse for me.
To the group… What goes into your choices for next steps in the treatment of migraine? How much of a partner are you in the team treating your migraines?
It sounds like you’ve been through both an emotional and physical whirlwind. You bring up a lot of different topics and I’m going to try to give my perspective on as many as possible. This may be a long and overwhelming message!
Your recent increase in pain could be an indication that the treatment didn’t work for you, but it is highly likely that it is a reflection of the cyclical nature of migraine. For most of us, some times are worse, some times are better — often with little apparent rhyme or reason. A person’s long-standing patterns can change after intensive treatment like you received or even after any effective treatment begins.
In-patient programs can be great, but it’s not uncommon for patients to leave unsure about which part of the treatment was responsible for an improvement. When someone has a sustained short-term improvement, they often don’t know until after three months whether it will continue or not. In fact, all preventives meds, whether given in-patient or out-patient, need a three-month trial to see if they will be effective. Only then can you really know if the improvement is the medication or the nerve blocks. That said, you know your body best. One way to tell what you’re responding to is to get another round of nerve blocks before the three months is up.
The term “migraine preventive” implies a medication that prevents migraine attacks. However, a preventive can still be considered effective even if the frequency of migraine attacks remains the same, but the intensity or duration is decreased. Ideally, a treatment will reduce frequency, severity and duration of attacks, but it is more common to only have a reduction in one of those areas. And that’s what doctors and researchers search for — at least a 50% decrease in one of those three areas.
What else did they give you for acute treatment? Lyrica as an acute rather than preventive is an uncommon, but not unheard of, use. I do hope you have some other acute medications, though, since it’s efficacy is far from known.
You ask what goes into choice for next steps. This is where that detailed spreadsheet may be helpful, but your gut might be as effective. What do you think is going on? Is there some weird pattern or symptom progression that doesn’t make sense to you? If there’s anything, investigate it — talk to your doctors, read blogs, look for other disorders that could be exacerbating the migraines. If you don’t have an instinct right now, look into what treatment has caught your attention lately. Maybe it’s something that seems to be working for people on forums or in blog posts. Maybe it’s something you saw mentioned in an ad. Whatever catches your attention, pursue it. (That can sound intimidating and exhausting. I recommend only looking into one thing at a time, both so you’re not overwhelmed and so you can test one thing at a time without other variables interfering in your test.)
This gets to your last question about how much of a partner others are in their treatment. I am the lead in my treatment, everyone else (including my brilliant and accomplished headache specialist) is my support staff. After many, many years, I learned that no one knows my body better than I do. No one else knows which symptoms wear on me the most or which symptoms are most important for me to treat (for example, I’d take higher levels of pain than I have now if it meant I could do away with the fatigue and brain fog; other people want the pain gone at all costs). No one else knows which drug side effects I’ll tolerate. I have become a patient expert in migraine, but well before that, I was an expert in my own body and my own needs.
Also, there’s so much unknown about migraine that no one has all the answers. Health care professionals will do their best to help, but there are many unknowns. A patient has to direct their own care to ensure that their individual needs are met — that means investigating treatments, seeing a variety of health care providers, adjusting so-called lifestyle factors and exploring behavioral treatments/coping strategies as much as possible. This can be frustrating and and exhausting and can feel like a lot of failure in the search for an effective treatment. Sometimes a person will need to take breaks and just nurture themselves for a while, but ultimately, the only way to get the best treatment is to be in charge of it yourself. As wearing as migraine is and as helpless as it can make a person feel, finding effective treatment can’t be passive for most of us. (I don’t meant to imply you’re being passive. The fact that you were at MHNI, you’re preparing for your next appointments and you’re asking these questions tells me that you’re active in your own care.)
I truly believe we can all find some degree of relief, but it takes a lot of active looking. This perspective comes from many years of experience. I found physical relief this year after an extensive dietary investigation that no headache specialist had ever recommended to me. I started the dietary search on my own because eating (anything at all) seemed to be my biggest migraine trigger. I found that a digestive enzyme provides great relief. My headache specialist knew nothing about it, but was thrilled that I’d found some relief. Before that, I’d had incremental improvements in my physical health and have done a lot of mental/emotional work to learn to cope and live a fulfilling life with chronic migraine.
I hope this helps and that I answered the questions you asked. Please let me know if I can clarify anything or answer anything else. I wish you all the best in your search for treatment. I think you’re on the right track.
It is a whirlwind of different trial treatments and different medication trials after an inpatient program like MHNI and it’s hard to distinguished what has helped and what hasn’t helped. I have had many high cervical facet blocks but, realistically, they don’t help much or long term that I always hope they will. I’ve also have my 4th Botox injections the end of November but, again, I haven’t gotten the response I have hoped for.
What’s next? I think your body, mind, and emotions have been through a crescendo and you need to take a break of trying new things. It is very difficult to get back to work and all the other stresses of life after an inpatient program. Although I shared with you my disappointment of the program, I felt exhausted for several weeks after going through it. Get some rest and let yourself heal and then make a decision of “what’s next?”.
I really want to follow how you are doing but don’t be so hard on yourself. One suggestion I have is instead of Excel sheets, check out some of the headache APPS that you can put on your Smart phone or computer.
One more thing, I totally agree with Kerri that we are the head of our treatments. For one thing, doctors don’t seem to communicate as much as they used to. There are so many specialists and then “sub” specialists in the medical fields. Keep a file of your own medical records. I haven’t been that good at it as I should have over the years and at age 58, I can’t remember when I tried what when they ask me questions about my past medical treatments and different medications I’ve tried.
Thanks to everyone who took the time to respond. Kerrie, I have to say a special “Thank You!!!” I appreciate time the attention it took to respond.
I am hearing, and feeling, the idea of being not only a partner, but the leader and coordinator of my treatment.
I cannot say what is behind the most recent improvement (at the second week out of the inpatient program) I noticed the intensity dropping a bit. So, is it the new medication program or is it something else?
The something else is a radical change to my diet. I have had suspicions about diet for years. I have made some attempts over the years around diet, but nothing like this. I have a meal replacement/supplement (Phood, produced by Plant Fusion) that I have introduced as I remove everything else. I know that I am treading in potentially troubling water as this is something I am doing “on my own” without the guidance of a nutritionist or physician. In addition to the supplement I have been taking a multivitamin. I suspect that this may be part of the decrease in intensity. My plan is to bring this up at my next follow up visit at MHNI.
The bottom line is that there has been some improvement in the way of decreased intensity. I have also noticed my mood and energy levels are a bit higher.
Although I still have the bad days, like today, where I miss work and basically crawl into a hole until the migraine passes by. What I can do a bit better now is to bounce back after the migraine has passed.
I could go on and on, as I have a variety of theories, suspicions, intuitive whispers, etc.
I cannot thank all of you enough for the support and sense of community here.
I suspect I will have more to respond to after I have fully absorbed everyone’s comments.
Hello to everyone and thanks for all the feedback!!!
Since my latest post things seem to have headed backward. The intensity has shifted back up into the 4 – 5 range on the 1 – 5 scale. The frequency never did change.
Follow up with my outpatient Neurologist at the Michigan Head Pain and neurological Institute brought exactly what I expected… changes in medications. Just a few minor dose changes. The neurologist was as grumpy as ever. He is good and once you past the crusty outer shell there is some compassion in there.
More important than the neurology appointment, my opinion, was the appointment with the physician that runs their pain management program. He has written the order to bilateral C2 root nerve ablation. Unfortunately the type he wants to perform does not, I am told, have a very high success rate of insurance approval. I have my fingers crossed! I just spoke to the team member working for this pre-auth and she said that the last three she has processed have all been denied by the insurances. One small bit of hope… Blue Cross asked her for some additional documentation. That may be a positive sign.
I have learned, however, over the years that getting too attached can set one up for a big drop if things fall apart under your feet.
So this time around next steps include:
1. Follow up appointments with neuro and psych in mid-December.
2. Follow status of nerve ablation approval.
3. As always, be present in the moment… breathe… and realize that migraines, at least mine, are not continual pain, all day, every day. i do have some moments without migraine and I need to be more thankful of those moments!