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Mayo Clinic Day #1

Update from my first visit with my Mayo Clinic doctor: Dr. Michael Cutrer.
First of all he read through my summary before he met with me and had ideas of a plan before he met with me and all of my spreadsheets made things go so smoothly today. So my effort was not wasted.
The Plan: On Monday bright and early I go in for my third and hopefully final ūüėČ (wishful thinking) Lumbar puncture (spinal tap). BUT this time they plan on doing so much more with the fluid than before. They plan on running several assays to determine if I have any immune deficiencies or any other illnesses that might come in up on the testing. If everything from that testing and the pressure testing from the lumbar puncture itself comes back normal we will just have to wait 48 hrs and then we can come home on the other part of the plan…if something turns up I will go back in to see the doctor to discuss whatever they find further.
The medication part of the plan: someone finally listened to me that Prednisone works. That my headaches/migraines have an inflammatory response that seems to be helped by prednisone. So he is going to start me at a very high dose and step down every week over the course of 8 weeks. If anything to finally get some relief a little more long term than 1 week. And at the same time he is going to be titrating me up on Neurontin, a medication I was given at the same time that I was given Keppra (a drug I knew to cause anxiety), and we were never able to determine if it would really help. In fact I was only on a dose of 100 mg/day…and this doctor wants to titrate up to 2400 mg/day over the course of the 8 weeks that I am on Prednisone, so that when I stop the prednisone I am at the highest dose of Neurontin which will hopefully take over the pain prevention. These are hopes, not guarantees. But at least their is hope.
So now my mom Sherry Dunne Weaver and I get to enjoy the weekend and hopefully meet up with friends. So what are you guys up to this weekend: Chris Gottschalk and Karen Connell. I am pretty sure that we are going to head up to Minneapolis one day to see Jeremiah Carpenter and Kelly Carpenter if it works out for them. And Mary Francis we will have to try and meet for lunch if you can get away one day. I believe I won‚Äôt be at the clinic long on Monday and will want to rest…but maybe we can take the shuttle to where you work on Tues or Wednesday for lunch. So many folks in this area ūüôā
Now that my anxieties are calmed, I know the plan and it makes sense…I feel a load of relief lifted off of me. Thank you for all of you who are praying (and that list is so long to tag everyone and I wouldn‚Äôt want to miss any, so just know that know that you are praying).
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The Plan: v 8.0 – Dr. Masih

Really bad night last night. Though the meds I am on provide brief periods of relief they still do not allow me to visit with many people (even 2 sometimes) without having a full blown, pain level 9+, headache. That is what happened last night. After company had left, I was left with a headache, pain level 9+ That lasted from about 5:30 until I was finally able to fall asleep. And then I was awake on and off all night with headache pain. I took a shower this morning and that seemed to help a bit. In addition to the headache yesterday I also made the mistake of not checking the ingredient list of Jelly Belly jellybeans. They are one of the few jellybean makers that do not use artificial flavoring. I tasted the
coconut and thought it’s just a tiny jellybean. Well it got me and for some reason it took awhile to figure it¬†out, oh yah my head felt like it was splitting open. Once I figured it out I took my antihistamine and within
about 25 minutes the stomach cramping had resolved and I only had the head to deal with. Better one problem at a time than two.

I have been feeling like I am going to pass out every time I stand and walk and then I get extremely weak feeling from head to toe. Like I am having to lift a bar bell. I wonder why they never said anything in the hospital before I left. They just said drink lots of water. When my blood pressure plummeted to 83/43 they put me back on IV fluids but didn’t really instruct me how to manage when I left. So all of this advice has been ever so helpful.

So my doctor apt today couldn’t have been timed better. God is in Control …relax. I have to keep reminding¬†myself of this.

Safe trip down. Praying for good direction from Dr Masih

Update from Dr: He agrees with the resident dr who had been treating me in the hospital that this is “just” a¬†migraine. But he also agrees that I am an extreme case. So he adjusted the meds I am on (Increased Keppra, increased Elavil, and stop neurontin). I am to call him¬†back in a week but in the meantime he wants me to look into 2 in patient headache clinics in case the¬†increase in meds does not work. One of the clinics is in Chelsea, MI (Michigan Head-Pain Neurological Institute: MHNI) and the other is in Chicago¬†(Diamond Headache Clinic).

It doesn’t seem like much of a game plan but at least it is something. In the meantime I need to keep¬†overstimulation to a minimum and try to start getting some exercise as I can handle it.

Nathan Gillikin:  Heather, have they diagnosed your headache as hemipalegic migraine? Do some research on that. Hemi headaches are as debilitating as what yours sound like. My wife had a few of those. She had slowed speech and partial paralysis as well. One hospital tried to push meds for stroke one time. I had to step in and tell them about hemi-headaches. Not much is known about them and they are hard to diagnose.

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BP drop/meds/going home: The Plan v 7.0 – Sparrow/MSU neurologist

IV is back in. Apparently they don’t like it when your blood pressure drops to 87/43. I failed at drinking¬†enough water. Wish they would have told me how much I needed. I drank my water bottle (24oz) over the¬†course of the evening but it wasn’t enough. Oh well. Not really a big deal. It’s just crazy to see your blood¬†pressure so low. And they repeated it several times. ¬†They don’t really seem concerned which is really weird to me, because I kind off am??? ¬†I think they are just ready to get rid of me. ¬†And I believe they will get their wish today. ūüė¶

I just called the headache/migraine clinic at U of M and the wait is over a year and 6 months for just a general neurology consult. We just have to pray that the meds and the nerve block injections will do the trick.

I think I must have been clenching my teeth on my left side last night because it feels like someone¬†punched me in the jaw. No pain on right side. It wouldn’t be right if I didn’t leave the hospital with something
weird.

After the neurologist came in for the last time, he added one more medication to my ever growing meds list: Neurontin.

Neurontin (gabapentin) is an anti-epileptic medication, also called an anticonvulsant. Gabapentin affects chemicals and nerves in the body that are involved in the cause of seizures and some types of pain. Neurontin is used in adults to treat nerve pain and has been used to treat migraine.

So I leave the hospital today on the following medications:

  1. Elavil (1x per day)
  2. Flexeril (as an abortive)
  3. Neurontin (3x per day)
  4. Keppra (2x per day)
  5. Magnesium oxide (2x per day)
  6. Birth control (1x per day)
  7. Prilosec (2x per day)
  8. Zofran (as needed)
  9. Topomax (until I have titrated down and off)

And of course I can’t leave the hospital without something else weird happening, besides the very low blood pressure. ¬† I woke up on my day of discharge and my ear was hurting on the outside edge. ¬†No idea but it sure did hurt..but as with my last stay at Sparrow, they just dismissed it and sent me home.

IMG_4195

UGH!!!!! ¬†How am I going to keep this all straight!!! Oh and let the side effects begin ūüė¶

March 13th

I’m Outta here!

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More Drugs and side effects! The Plan v 6.0 – Sparrow

Today they started a new preventative medication and  another abortive medication.

Zyprexa (Olanzapine) is an intermuscular medication that they were using as an abortive to try and give me pain relief. ¬†Too bad it didn’t work.

Keppra (Levetriracetam): They gave me a 1500mg dose through the IV to try and stop the migraine cycle. ¬†Unfortunately it gave me severe anxiety…and I mean severe. ¬†I kept trying to tell the nurses that this was happening but it was an intern and she just asked me if I wanted some Benedryl. ¬†“I don’t know, you’re the nurse, ask the doctor, can’t you see I am crawling out of my skin” ¬†It was awful and I was pissed off at the nurse to boot. ¬†I finally had to call in the main nurse on staff and have her call the doctor to come…I was very serious about needing help. ¬†So they just added another medication to my list of medications: Elavil.

Elavil (Amitriptyline) is a tricyclic antidepressant.  So when they put me on this medication they took me off of Prozac, the antidepressant that I have been on for 5 years and was working very well.  The anxiety never really did go away from the Keppra.  

However at the end of the day I still feel like I am crawling out of my skin.

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The Plan v 5.0 – Sparrow Hospitalist

The next abortive medication (a new term for me…abortive medications are meant to be used to stop a migraine in its tracks. ¬†Some medications, like Topomax are preventative medications) they tried was¬†called Imitrex (Sumatriptan). ¬†However it¬†made my head hurt so bad that there was no point continuing to try with that med. ¬†They also made¬†Flexeril (a muscle relaxant) an abortive medication because I convinced the doctors that it had worked in the past, so they put it on a list that I could take every 8 hours as needed.

I think the goal is to knock it completely out even if for a day and then figure out how to keep it away. Pretty sure I am on board. 22 days has been a long haul to go without complete relief.

They are also now sending me for another MRI (MRA/MRV) to get a better look at the vasculature in the brain.

Then¬†they tried the¬†steroid Depakote/Depacon and I reacted very poorly to it. Tight chest and lots of anxiety and¬†can’t sleep. No more steroids for me (In retrospect almost a year later, I really wish I had not taken steroids off the list so quickly because I discovered that Prednisone was extremely helpful down the road). ¬†Add EKG to my list of firsts. ¬†A precaution because of my reaction and continued reaction¬†to the steroid. But more anxiety and respiratory not cardiac. Again just precautionary. Then they gave me a¬†Flexeril as I tried to calm down after the reaction to Depacon and¬†then, most importantly spent¬†the rest of the day watching Downton Abbey.

Update: still in the hospital and still trying to get the headache pain under control. Good news (from a¬†Dr stand point) nothing that they can find is causing this headache. So I can see how it is good news; no¬†tumor (Arnold Schwarzenegger “it’s not a tumor” sorry), no aneurysm, blood clot, infection. Nothing¬†really bad that they know how to test for. Bad news: that puts me in with with all other migraine¬†sufferers who have no answers for what is causing the headache or how to specifically treat it.

Doctors Plan: Continue trying to knock down the headache so that it is manageable for me to go home, try new preventative meds to keep it from coming back once we knock it out and follow up with the neurologist.

My plan: I am currently considered a fall risk because of the meds they are taking me off of and so getting up and about is difficult. Therefore I have no idea if my head is actually better or not so Dan is going to come up tomorrow and get me up and around and see how I am doing then just to make sure the pain is actually knocked down when I am up and about not just when I am laying flat. In other words manageable pain while functioning.

March 9th

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The Plan v 3.0 – Dr. Wulff

I went to my family Dr today. It was supposed to be the apt that would clear me to go back to work and I would be all better. No such luck.
The new game plan is two fold. Part 1 is if I experience anymore of the unbearable pain I go straight to the Sparrow ER. The other part of the new plan is that he is referring me back to the neurology team that treated me in the hospital. My leave from work is extended for 6 weeks as far as my dr is concerned. It still has to be approved but hopefully it will be.

My current¬†medication, Topomax (Topiramate)Topiramate_3D, has so many side effects it’s crazy, so my family dr said I could start stepping it down if I wanted too. ¬†On the flip side¬†I¬†finally got a couple of days of minimal relief. So it is a toss up!! so I pray specifically about this. The meds¬†are only just helping and only a little, but the relief is welcomed. ¬†I did figure out that when I got my first dose of 25mg Topomax at the hospital (Wednesday), I woke up the next day and the photo sensitivity was a bit better and the headache wasn’t so severe. ¬†Thursday¬†the doctor upped the Topomax to 50mg and I felt a little bit better. ¬†Friday they added Elavil because my anxiety was really bad and sent me home on 50mg Topomax. ¬†By Saturday¬†the tension part of the headache was gone but the pain over my right eye was still there, just a little bit better. ¬†This continued for Monday/Tuesday. ¬†But by Wednesday the headache returned in full force and continued to increase in intensity through Thursday and Friday (when the cognitive disabilities began). ¬†The intense pain continued through the weekend into Monday. ¬†On Monday March 2nd I increased Topomax to 75mg and during the next 3 days the headache pain level had decreased to manageable. ¬†I believe there is a trend with the Topomax but with every increase in dose, the side effects begin to increase as well.

Side Effects of Topomax: At times I don’t¬†remember where I am or how to¬†turn something off I have turned off 50 times (all brief but scary). My mind gets so jumbled I can’t answer ¬†simple questions. I have great difficulty starting a conversation. ¬†I switch words around. ¬†I can’t do simple math problems. ¬†In other words cognitively, Topomax isn’t so good for me. ¬†So weird that medication can do such strange things to the brain.

How could an allergic reaction to an allergy shot have landed me here? ¬†That’s all we want to know!! ¬†¬†And when is someone going to help stop this damn headache.

 

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The Plan v 2.0 – Dr. Wulff

I kept waiting to do an update because things were plugging along with little to no change with a headache that was always there but I was learning ways to cope with it by taking showers and lots of naps. The medicine was making me extremely tired and I was napping a lot. I am also adjusting to being home; the sounds, the lights, the smells even. I am still preferring a dark quiet room though which is to be expected with a headache of any kind. I am starting to gain back some energy as well. The Dr told me that it would take 3 days for every day I was bed ridden to recover. Ugh! 3 weeks to regain the strength I lost during my hospital stay.

Yesterday I went for a follow up apt with my family dr and we have a game plan. I am so grateful that my dr understands Topomax both on a personal and professional level. I feel so much better knowing that I am in good care. So that is good. However, after every Dr visit over the past 6 weeks something always and I mean always got worse. And this visit was no exception, nothing major. But my headache got worse within hours of going to the Dr, nothing drastic but the headache kicked it up a few notches which is a big bummer but not entirely unexpected really. It could also be the weather adding to things. The Drs said the worst of this rebound headache would be for the first couple of weeks and then only time will tell. But it sure is making me start to wonder whether or not I should just stop going to the Dr altogether:).

At any rate dark, quiet places are my friend and are truly lovely.

On a positive note: Gideon got excepted into the Great Start Readiness Program for next year. How exciting!!! My little boy is
going to preschool!!!

feb 24th