Tag Archives: MHNI

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MHNI #14

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March 31st, 2016: I remained at baseline NDPH all day which was a great relief compared to the days leading up to this visit.  I took an Amerge just to make sure that a migraine didn’t decide to join or that the NDPH didn’t increase.

I had such a great day.  My friend Dawn rode down with me and we talked all the way.  I drove and I talked and my head pain did not increase…it was wonderful.  I even drove home and talked on the phone for a good majority of the trip home since Dawn had food coma and I was trying to prevent going into food coma 😉

I was really worried about my appointments today because I had to tell them about Mayo Clinic, but it turns out they already knew because they all had to sign off on the records to go to Mayo.  They were very supportive and were anxious to hear any findings from Mayo.  What a relief!  And anxiety for no reason.  Oh well, I just didn’t want them to think I was going behind their back…I really just wanted to have someone look further into what might be causing the constant head pain.  Almost 15 months now!  Never how I imagined it would be, but have done my best to take it in stride.  So glad that my Dr’s at MHNI had my back about going to Mayo Clinic.  I leave in 5 days.

In between Dr. apts Dawn and I went shopping to 5 Below….great store, but you really have to limit yourself or you could spend way to much money without even knowing it.  And then we were going to meet up with my high school friends Kristen and Steve and their son Eli.  Unfortunately they were delayed and we only got to give hugs, say Hi and good-bye.  But the food at Olive Garden was awesome.  I hadn’t been there in so long.

Oh and I stayed awake all day!!!  Big deal for me really!  Thanks for making the trip with me Dawn…it was much needed girl time!

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MHNI Visit #13

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2/2/2016 Yesterday I had my follow up with my Dr’s at MHNI yesterday.

I woke with a full blown migraine. I took my morning meds and an IMITREX, put my IceKap on and slept for an hour. When I woke up I felt so much better, thank goodness, because I had no idea how I would make it through the day.  Gideon took all of his meds like a champion this morning (thank goodness). He had to go with us to the Dr. appointments because he couldn’t go to school, I couldn’t drive and we didn’t want to expose anyone else to his multiple illnesses.  So he got to hang out in the car with us for the day. He is all set with electronics, movies and his new little stuffed animal. Then as we went to all get in the car, we had locked our one and only set of keys in the car. Luckily Dan is a pretty handy guy and we still had a metal hanger. Car unlocked, and only 15 minutes late. Then I downed some ice tea (caffeine) to further help knock out the migraine.

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My neurologist changed the triptan I was on (Imitrex) to a triptan called Amerge for an abortive med for the classic migraine, hoping it will have less side effects.   We also discussed adding Flexeril to my preventative meds for NDPH. He had read an article that people with NDPH have had great success with Flexeril, so I will be starting that tomorrow.  We will see how it goes. It is a low dose so hopefully I won’t have to many side effects.  The last change to my meds is to increase my migraine preventative medication, Robaxon to its maximum dosage to see if I had any better luck at a higher dose.  At my next office visit if my migraines haven’t gotten any better, we will try a new preventative med.  I didn’t want to add a new medication before our vacation. If the increase in this med doesn’t work, we try another at another at my next appointment. The goal is to find a med that will break the cycle of the migraines and NDPH and prevent further head pain. I also now have the option to make an apt for nerve blocks in my temples as needed every 6 weeks which thus far has been a miracle block.  I get an entire week of pain free.

2/3/2016 Today Gideon and I had a whirlwind day.  Josiah had a delay in school, so we drove him to school, so Gideon and I went to CVS to return our late Red box movies..ugh, we have to stop doing that!  And then I realized I forgot my prescriptions…ugh again!  We did manage to get to the post office to resend for the 3rd time documents to SSDI…ugh why do they keep losing my paperwork.  We drove back home to get the prescriptions…ugh.  Went back to CVS and then headed to Eaton Rapids for lunch with Dawn at McDonalds…Gideon was so excited!  Then a follow up with his Dr.  He is still full of illness 😦  Double ear infection still, swollen glands, sinuses completely blocked up.  So she prescribed prednisone to help all of the swelling (Is it bad that I want to keep the prednisone for myself 😛 and no I gave the steroid to Gideon.  He is feeling better, but just the energy level!  The rest of his little body still hurts.

Once we got home I passed out with a migraine on my left side (very unusual for me, most of my migraines are on the right side).  Still have a mild migraine but a good day overall.

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Do you have trouble with blood draws or IV starts?

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Ever since I was a patient at Chelsea Hospital in the inpatient program through MHNI I have had veins that seem to collapse, create a hematoma (a solid swelling of clotted blood within the tissues), and act like brittle paper.  While I was there I had 31 needle pokes to either draw blood or start new IV’s because the previous one was hurting so bad.  I was on a medication called DHE (Dihydroergotamine) that causes vasoconstriction (the constriction of blood vessels, which increases blood pressure) and tends to be really rough on veins.

So every time I have to go the ER or have blood drawn I end up with what you see below.  The bruises on the hand don’t show up very well but boy do they hurt.  They always try the hand first and then work their way up my arm trying to find a vein and trying to find a vein that won’t collapse.    When they just can’t find a vein, even after 6 pokes…they finally call in an IV team (I had never heard of it until my last ER visit) that uses ultrasound to find a vein deep down that wouldn’t collapse.  It was so fast and easy…I wish they could always do that, but they can’t.

One of the biggest problems I have is that if I have a reason to go to the ER or have a procedure done, I am often in the middle of a migraine, so I am very dehydrated.  Hopefully having the Migraine Cave stocked with water (which has already been helpful) will make this plan more effective. But after what happened during my last ER visit (pics below) I have come up with a plan:

  

MY NEW BLOOD DRAW/IV PLAN

My plan came about accidentally really.  I was shopping at Walmart in a clearance section and came across the gloves that are show below, called Red Hot gloves.  They came with two hand warmers that you insert into the top of the hand into a little pocket.  The hothands that are in the picture are cheap replacements since they are only 1 time use.

About a half an hour before a procedure, blood draw or IV poke I plan to put these on to heat up the veins on the top of my hands.  The idea came from MHNI wear they often submerse my hand and arm into warm water and then a lab used one of the hand warmers after I told them that my veins were difficult to find.

I get so sick of the phlebotomists that just think they are going to be “the one” that gets it on the first try.  Four tries later, after not taking my advice about heat on my hands I have 4 hematomas and they have finally found a vein.

Now I can always have heat on my hands coming into the lab, hospital, ER, etc.  I don’t have to deal with the person that won’t listen to me that my hands need to be heated in order to draw blood or place an IV.  I took my health care into my own hands.

The second part of my plan is only for times when I have scheduled procedures or blood draws, this will not work when I end up in the ER.  But hydration is soooo important for blood draws and IV starts.  This last blood draw, I drank water from the time I woke until 1:00pm when I got my blood drawn.  I read that 64 oz. the day before and the day of is the most helpful amount and that excessive amounts are not necessary.


This is my new water cup for my Migraine Cave…it holds the 16oz bottles of water perfectly 🙂  And it is soooo cute!

My Plan In Summary

  1. Hand warming gloves about a half an hour before blood draw/IV start
  2. Hydration: 64 oz the day before if possible and 64 oz the day of the blood draw/IV start.

 

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MHNI Visit #7

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Update from the Dr visits: in short I feel like they are doing nothing to help figure out the cause of the headaches nor are they helping me to deal and manage my daily headaches. It was as if they had no insight at this visit they just seemed like YesMen. I asked for an MRI and they said sure. I asked for a possible sleep study and they said sure. I asked for continuing PT they said sure. I asked to go off of Lyrica and they said sure. I told them the reaction I had from the Botox which was a forehead full of pimples and terrible itchy scalp and their response was, it doesn’t look that bad lets still do the next round. It was nuts. It felt like such a waste of time. Plus the new neurologist came in introduced himself by shaking my hand said two words to the PA I was speaking with and walked out. It was so rude and not a way to make a good impression on a new patient. So the only thing that one Dr set up that he already had a plan for next steps is a C2 nerve block. So that will get scheduled, I will stop Lyrica, get an MRI, possibly do a sleep study, and get the next round of Botox is Sept.

I am so frustrated. Plus they are not getting their paperwork into long term Disability so I am now going in to no pay period because of paperwork ugh. So the headaches rage on day after day after day for 7 months straight now. I am starting to go a little crazy. The C2 block and the next round of Botox and I believe they can give me no more help. They acted yesterday like they had all given up on my case and I am again without a way to manage my daily pain. Sorry to vent. It’s just getting old.

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Botox: MHNI visit #6

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6/18/15 My insurance company finally approved the Botox for 3 rounds of injections through the end of the year. Headaches have been pretty awful lately so I am really hoping this does something positive.

June 18th

Botox is done. It was awful…30 injections in my face, around my head, down my neck and shoulders.  So yay!  No more wrinkles.  I did have to do a Toradol shot, so I am feeling a lot better now.  So my mom and I went off to lunch at Five Guys Burger where I was sorely disappointed because their fries are deep fried in Peanut Oil (allergic to peanuts) and the oil was everywhere. Just hoping I don’t have a reaction. Then off to Trader Joes where I bought spicy California roll and the very best spicy black bean dip!

On our way home to rest. Long morning!!  Unfortunately the peanut oil or the California roll hit me bad on the drive home…first the bloating (I can literally feel my pants get tighter) then the gas and then the cramping.  Luckily I had my antihistamines with me and took it but I always feel crappy for several hours after..until the bloating and gas and cramping stop.

So all in all a fun day 🙂  Haha!

 

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MHNI Visit #5

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Mother/Daughter day aka more Dr apts. We tried a new restaurant out today and are having lunch between apts at Noodles and company.

Really the only changes that occurred today were that Lyrica was increased to 150 mg a day and Imitrex 100 mg was added as an abortive medication.

I did receive the Doctor notes from my pain psychologist and it is always interesting to see what I talk about and what I am stressed about, etc.

Medical notes from Dr. Lake

Headaches: Mixed experience with headaches since RFA procedure with Dr. Shamas on 5/22/15.  She had some significant improvement within about a week of the RFA which would be unusual as a direct result of the RFA.  At that point she began doing more when the pain level was at a low range (1-2 on a 5 point scale), may have done too much, her headaches escalated, and she began to back off on the level of activity.  More recently in the past 2 1/2 weeks there has been mixed ups and downs with some severe headaches back up to the incapacitating level, but she understands this is still quite early to determine the efficacy of the RFA procedure – we would not respect significant results this early.

Botox: It was her understanding it would be scheduled today with Dr. Da Silva.  I am giving her chart to our charge nurse to confirm that the product is available and planned for today’s visit although that does clearly appear to be Dr. Da Silva’s intention in documentation of the chart (unfortunately Heather informed in a passing conversation with me at the end of the day that her insurance will not cover Botox at this time – I did not have an opportunity to explore that further).

Return to Work Issues: We faxed the FMLA forms that she had given us to her work Human Resources group on 5/22/15.  Heather informed me today that although we had extended her return to work date until 8/16/15, her work has given her another form different than the last one that they insist must be completed today.  I am arranging for her to talk with Margaret in our medical records group to review the form and determine what might be reasonable in terms of communicating with them and actually completing this.  To get this kind of form completed on the day she is seen here is not a reasonable expectation, but she will show it to Dr. Da Silva and get his overall view of it.  I do not believe she is in any position to sustain a successful return to her former job at this time and we will need to reassess in early August if it would be possible for her to return to work by 8/16/15.

Carpal tunnel syndrome: She has had some episodes of significant carpal tunnel symptoms in the past, and has carpal tunnel braces that she wears when symptoms flare.  Normally she does not wear it.  She had some issues with her right arm that she addressed by wearing the brace continuously for a period of time, and function and appearance improved significantly.  I encouraged her to consider wearing the brace routinely at night, to minimize any low-end RE:incipient irritations of the nerve.  This is particularly critical both in terms of her work as a microbiologist but also in terms of her alternative potential employment as a photographer since she holds the camera with her right hand that is difficult when the carpal tunnel is acting up.  She has however taken some pictures recently of her kids showing me the change from the first and last day of school and a recent haircut and is trying to be more active in general.

Functioning: She stated she is trying to do more walking and other activities when she feels better, trying to find the right balance between overextending herself as noted above when she had those 5 good days in a row shortly after the RFA.

Cognitive functioning: She continues to report some words switching such as telling her kids “load the refrigerator” when she meant loading the dishwasher.  Although she has had occasional examples of this occurring in the past, the frequency is now several times a day, and appears correlated with increasing her dose of Lyrica.  She states when she does at the beginning of the week it is more noticeable and appears to improve a bit as the week progresses.  She is currently at 125 mg twice a day and will be titrating to Dr. Da Silva’s recommended 150 mg twice a day.  She is not sure at this point how much Lyrica is helping her.  She did report some similar kids of issues at my last session with her before the RFA procedure.

Adherence with relaxation and biofeedback techniques: Excellent.  We did not have an opportunity to review some of that in session today but she gave me examples of using the techniques on an ongoing basis as well as helping herself relax as she goes through the physical therapy procedures with her neck which she feels is helping improve range of motion function as well.  She will see our physical therapist Andrea Sherman later today and request another physical therapy prescription.

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An Update

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Starting with the positives. The neurologist did the nerve block again and again with success. And although temporary it means that I not only have some headache free days over the next week as along as I don’t push it, but it also means that I am a good candidate for the radio frequency nerve ablation, where they basically kill the nerve that is giving me such terrible headaches. I meet with the Pain Specialist next Monday for a consult and will hopefully get that scheduled, however they are scheduling 6-8 weeks out. This will be a more permanent solution whereas the nerve blocks at most last a week.

They are also checking with my insurance company about Botox injections to see if they are covered. The neurologist is hoping that ablation in combination with the Botox and medication (of which I am now only on one called Lyrica) should treat all three headaches that I have going on at any given time.

The physical therapist also gave me a script for a tens unit to help between now and when all of the above have been completed and take affect. I am also going to physical therapy and for the first time in a long time the majority of the tension in my neck is relieved. So that is wonderful.

My next apt with the neurologist is June 10th and so my return to work date is June 10th. My FMLA runs out May 25th, so I am not sure what that will mean for my job. Trying pretty hard to put this all in God’s hands because it is truly out of my control. I really would hate to lose that job, it was one of the best jobs I have had and it was such a great company to work for, but at this point there is no way I could possibly work. When all 3 headaches decide to be present I am down for about 3 days, in bed all day. And although I am learning some of the triggers and can try to avoid them, talking is one of my biggest triggers as well as bending over or looking down, chin to chest. I have also found that using my arms out in front of me quite quickly brings on at least one of the headaches.

So again I say this is all in God’s hands at this point and I have to rely fully on him.

March 3rd

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MHNI Visit #3

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My mom and I are on our way to down to MHNI for a full day of apts. Today’s visit will also determine if I will be able to continue on Short term disability and whether or not my job will any longer be held for me. So much in limbo right now. My last day of FMLA is May 25th and STD lasts until Aug 6th. I’m not even sure what to pray for at this point. But they will do another nerve block today which will hopefully give me a week of relief but when it wears off the migraines and headaches come back in full.

Today I met with Dr. Lake (pain Psychologist), Dr. Da Silva (Neurologist) and Andrea (physical therapist.  The main things that came from this were that they titrated Norflex daily down to stop the medication due to side effects.  I was still also increasing Lyrica (but side effects from Lyrica were also starting to take effect as the dose increases, but I am still willing to give it a try). Dr. Da Silva also recommended that I meet with the General Pain Division, Dr. Shamis to see if there might be more options for other nerve blocks to try.  Dr. Da Silva also did another nerve block in my temples and doubled the steroid.  I am very much looking forward to a few days of pain relief.

Starting to lose hope that the doctors will ever really figure out what is going on and how to help solve it.

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Medical Notes from the visit to MHNI

Headaches: Some improvement continuing, but has also had some very severe headaches typically related to extensive talking with a friend that triggered a three day incapacitating headache, exertion in combination with a head-down position when she took a walk with her family and watched her kids picking up rocks and head down position when working at the computer.

A supraortbital aricular temporal block from Dr. Da Silva on 4/22/15 gave her a clear week of relief wtih a headache level dropping to a mild level for extended periods of time.  The severe headache triggered teh the walk and looking down occurred exactly one week after that block.  She will have a repeat block today by Dr. Da Silva, followed by a possible Radio-frequency Nerve Root Ablation.

She reports an increase in stress concerning her ability to return to work successfully, and other financial concerns that are unrelated to work including trying to sell a rental house that they are in the process of repairing after it had been vandalized by their tenants.  Her FMLA expires on May 25th.  Her employer (Neogen) has sent her a note explaining that they will not be legally required to maintain her job for her, but may be willing to do so when they receive appropriate information from us.  She logged in the appropriate form with Medical Records today and I put her name up for discussion with multidisciplinary treatment team for our next meeting on Tuesday, May 19.  I am also sending her a copy of this note which outlines her progress and behavioral treatment.

As she explained the ergonomics of the job to me,  it involves a great deal of laboratory work, making media, working with big dishes of media, and working over a safety hood that requires her to lean forward and extend her arms out in front of her which put some strain on her neck and back musculature.  We discussed trying to keep her self centered over her hips, but I also talked with our physical therapist about these issues and how that might be addressed in physical therapy.  She is scheduled to see our physical therapist, Andre, shortly after this apt today.

Also, she has continued to have some cognitive issues with word finding and word substitution.  Her job requires significant Cognitive demands.  In my judgement we are making progress but not in a position where she will effectively make a return to work before May 25th.  However, this is a treatment team decision.  She will see Dr. Da Silva, her primary neurologist with our group later this afternoon.

Anxiety and depression remain improved: however some return of depression after the last weekend with severe headache after she spent three hours talking with her friend.

She reports excellent adherence with relaxation techniques, and states they are quite helpful with the moderate or low-end severe headaches although it is very difficult to relax when the headache reaches an intense or incapacitating level.

I introduced her to biofeedback training. Bitemporal EMG was 2.25 mcV at baseline which is normal range.  However, when she would talk, it would rise and remain about 7 mcV, requiring some sustained attention to bring it back to a lower level.  With visual feedback she was able to drop this to 1.5 mcV and sustain it at that level, at times dropping a little below that, which is our target range.  I underscored the importance of continued attention to jaw relaxation, particularly while she is doing other activities, and returning to her baseline after talking with some sustained attention.  The temporalis may play a key role in some of the vice-like pain over the ears extending to the top of her head.  She also reports pain at times in the TMJ area, that may even extend into the mandible.

Right cervical trapezius EMG was elevated to 3.5 mcV range at baseline.  With instructions to sit with good back support and imagine that she was suspended from a cord with extension of her spinal column aligning her neck through the top of her head, she immediately dropped to below 1.5 mcV.  We discussed the importance of ergonomics and how she keeps her head from being in a down position, using a music stand to hold papers that she may need to work from, consideration of getting a monitor at eye level rather than hunching over to look at her laptop, not sitting on the couch when working on her computer at home, consideration of a wireless keyboard that she could hold on her lap while looking at the screen at eye level.  We also discussed the importance of returning to good posture positions and jaw relaxation as a baseline condition.

I will see her again at her next medical return visit.  She stated the session was quite helpful to her.

Dr. Lake

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MHNI Apt #2

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I called into the dr yesterday with the worsening vision and jaw pain and some word loss. So I met with my neurologist today. After going over all my meds and making a few adjustments we discussed what over the past 3 months had given me any relief. My only response was the narcotic Nubain that they allowed me to take for some relief. It took the pain completely away for about 7 hours.

And then talked about the trigger point that the physical therapist found and sprayed Ethyl Chloride on and the headache went completely away for a short time but reduced for several hours.

So he decided to do a nerve block in those trigger points the headache went completely away as long as the lidocaine wore off it started to get worse but has eased up again this evening.

But my friends and family, we might be getting closer to root cause behind the headache and it is a nerve issue. Next step is to monitor how the steroids are doing and do another nerve block at my temples/trigger points in a month. If that works they will discuss and attempt to kill the nerve to hopefully get full or at least some relief. They would just have to get the right nerve. But it would resolve the jaw pain blurred vision and headache as I understand it. This might be to much to believe in but for today I have hope. And for that, today I am grateful.

Meds: He is slowly ‘ up the dose of Lyrica to see if I can get more of a full effect.  Stopped the Norflex as an abortive and made it into a preventative every day medication.and added Zanaflex as an abortive.  Also recommended B12 shots.

Comments from FB:

Shanon Smith: Great news. Will continue to pray for you!
Michelle Govitz: Great news! Still praying each day
Joy DeSimpelaere: Prayers they find it soon!
Shannen Rowe Dubose: Excellent news.
Kristen Long: That is good news Heather. Glad to hear you had some relief and forward progress is being made
Natara Loose: Are they 100% sure it’s not MS? Since it runs in our family? I take it you already got an MRI and CT SCAN and spinal fluid analysis? Just looking out for you cuz
Dawn Tomlin: This is a hopeful break through! All in Gods timing!! I will continue to pray for the smallest things and relief!!!
Heather Loose Johnson: Yep they did all those tests plus like 50 others it felt like. I let them know I had MS in my history. There were some spots on my MRI but they were pretty certain the spots were caused by the headache/migraine. I will have a follow up MRI in 4 months to be sure because there was a slight chance it was autoimmune. So they are keeping an eye on that.
Heather Loose Johnson: Two of the spinal taps lead to spinal headaches both times that lead to a total of 3 blood patches. Sucky. But I will bring it up again. The clinic treating me had not yet received the scans. Good reminder I need to call the hospital to get a move on the medical records. My mind pretty much sucks.
John Silverstone:  At least it sound like there’s light at the end of the tunnel. Still Praying