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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. 😦

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 😦

March 13th

I’m Outta here!

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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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Admitted again: Plan v 4.0 – Sparrow

The word Rebound Headache” is being taken off the table at the time and the are trying aggressively to knock down the headache without using the types of drugs that could give me a rebound on top of it all. I am now in the category of Intractable headache with no known cause because it does not fit the profile of a tension headache (to severe, to long lasting), or a migraine (location and duration doesn’t seem to fit), not sinus or ice cream headache ( just the thought makes my head hurts though).

Saturday (7th) Initial Medication (The migraine cocktail):  Ibuprofen 800mg, Benedryl  and Zofran.  But alas the headache prevails. This bugger is not going to go down without a fight.

Sunday (8th): They started me on an alternate form of Magnesium known to help headaches, just like last time and waited 24hrs.   They also started taking me off the Topomax because it has turned me into a blithering idiot. I couldn’t do a simple math problem for the dr, and I had a hard time spelling my name. It was time to stop that one for
sure.

 

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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

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And “The Plan’s” Begin: The Plan v 1.0 – Sparrow Hospitalist

The last 24 hours have been horrendous…no pain meds at all, only the magnesium.  Oh and in the midst of this horrendous pain, they decided to do the MRI.  MRI + Massive Pain = severe anxiety and no MRI.  As I sat waiting for my turn in the MRI I began have a panic attack because I knew there was no way I could possibly make it through…my nurse finally came down and pumped me full of morphine.  It was as if I could feel all of my worries and pain melting away.  I made it through the MRI and brought me back to my room.

A neurologist finally came in and laid out a plan to treat the rebound headache.  And so it begins. They have given me the first round of medicine, Topomax, to treat this, what should I call it, shitty headache. I’ve been told that the side effects could be interesting. For example my nurse who had also taken this medicine told me it made her stupid. She would order food at a fast food restaurant, go to pick it up and wonder who ordered it for her or she would get up to go to the bathroom and couldn’t find the bathroom in a one bedroom apt. so this should be an interesting next couple of days.

They tell me it could take 2 to 3 days for this medicine to work, if it works, and if it doesn’t work they try something else. so it looks like I will be in here for a little while yet. On a positive note and even though I feel bad, I am really happy that my mom and Bob are coming home. When I was going into the MRI and was in so much pain all I could think was ” I want my mom” and now I get my mom. Up until today Dan had been so sick he couldn’t come up to the hospital.  I was so glad that he was feeling well enough to come visit today and bring me a few things from home. I am so thankful for such a supportive family and so many supportive friends I love you all and thank you for all you’ve done including all the prayers. I’ll try to update again tomorrow.

feb 16th meme