Drug interaction with intracranial hypotension

[horizontal handmaiden]

Hello friends, horizontal handmaiden here. I've experienced an interesting phenomenon (for lack of a better term) in my search to find the warrior that will successfully combat intracranial hypotension, and thought I would share my experience.

Through the years, I've had morphine intravenously in hospitals and found that over a couple of days of repeat administration of high dosages, the ICH would come down a notch or two to a more manageable level (if there is such a thing as "managing" ICH). Additionally, I've have morphine-compounded drugs postoperative my two spinal surgeries (2002 and 2003) to patch the tears by I.V. and by tablet (my ICH results from spontaneous multiple spinal tear sites), which had the prescribed effect. At the time I was struck down, I was on synthetic hormone replacement therapy.

Now fast forward through all the fun of the last five years with the medical community, and, what do you know, but the administration of morphine drugs intravenously (morphine, Dilaudid, et al.), or by pill (OxyContin, M.S. Contin, others) or patch (Fentanyl), and taking hormone replacement therapy by pill or patch ... greatly exacerbates the intracranial hypotension ... and often spawns an allergic reaction of throat closing up, fever, and hives all over my body. The ICH is immediately exacerbated to the point that I am internally screaming and upchucking merely by lifting my head off the pillow -- I consider it, implosion time. The last two months I've had to ambulance to E.R. because of medication trials; at the hospital I was given Dilaudid intravenously (again, a drug I've successfully received in hospital in the past) which ultimately brought the intensity down. The last trial was a prescription for Dilaudid in tablet format and after taking several on the prescribed schedule, again, my pressure skyrocketed; my friend took me to the doctor's office wherein I received the old "stand-by;" i.e., a Toradol injection which doesn't do a dern thing. I can't take hormone replacement therapy for the same reason ... despite the fact that I continued on HRT through the first year or so of this condition (ultimately I stopped it to try organic HRT) ... when I tried to go back on the synthentic hormone (tried both pill and patch) in early 2006, the same thing happened ... within a day or two, the ICH went nuts.

I find all this quite interesting ... my body now rejecting drugs that it has not in the past ... and seemingly rejecting drugs (e.g. the Dilaudid) which I can take intravenously but not by pill or patch (e.g. the Fentanyl morphine patch). I wonder whether any of you have experienced similar? I've known for some years now that absolutely nothing works on ICH and have just been quietly abiding, but my friends wanted me to keep trying for relief and so I was referred to pain management. That is what got all these new (and recent) drug trials on my body, which wreaked much havoc the last few months. My friends are so kind to me, their investment in my suffering so genuine and heartfelt, that often I just find myself silently begging the Lord to provide them comfort that I cannot. But, NO MORE TRIALS!!

Lastly, I was prescribed Norco in December. I had been taking Vicodin E.S. for my spinal discomfort, and was told Norco is a bit stronger; I share this to say that I like the effect of Norco on my body. I always consider my spinal pain and discomfort as somewhat separate from what's happening every minute in my bloomin' head, although I know, of course that one would not be present without the other. To me, it rather feels like an elephant sitting on my head, pressing down on the brain, squeezing my head as though it were in a vise, and then the elephant's big fat legs pressing down on the neck, the shoulders, and on down ... so I am grateful that Norco seems to provide a measure of comfort for half of this condition. I must take it before the discomfort becomes too great, though, which sometimes can be after a few hours of get-ups (get up to change into fresh p.j.s or shower, get up to the bathroom, get up for a second cup of tea ... ) is that your experience? Mostly, I have fought an internal battle these years of not wanting to be dependent on pain medication, but lately, I've thought, the heck with it, if I need a Vicodin or Norco to get me through this day, these hours, then I just have to do that. I see that I was perhaps a bit stubborn and impractical in this regard ... my "natural" self is really unappealing, ya know! :eek:

Well, my thanks for reading this lengthy message, and for any input you may have. I know our walk with this condition can be rather bumpy and messy at times, and many days we do not feel like talking or listening ... case in point, I've been off this board for just that reason. I have corresponded with some of you in the past before the board went down, such as squeaky'smum and ccnut as well as that master of hilarious-phrasing, mister guinea pig himself, and also I made a new friend last November because of this site, that very kind and gracious lady known as "pain-in-the-neck," who is anything but! The Internet sure has its positives!

h.h.

[CSFChallenged]

Dear H.H.,

Bear with me this will be long. I have also been reading or following this site for years. I was dx'd with Spont. leak in May 2002, after presenting with hearing loss for 6 weeks and then finally a crushing headache and multiple freaky cranial nerve symptoms.
After IV caffeine, high dose steroids, theophylline, Vit A TX and 5 blood patches and a saline patch I went to Mayo. Mokri said I had 12 dilated and suspected leaking nerve roots and due to the number was not a surgical candidate. He sent me on my way and said, "just wait, it might get better."
For the first 3 months my HA(the classic pressure at back of head, pulling downward, worse if you lift or bend, etc.) went away when lying down. After those first few months the head pain became 24/7 which Mokri said was pretty common with sustained leaks. Schievink also saw my films, and agreed with Mokri's assessment and plan.

So, for the first 2 years I stayed in bed 24/7 and rarely took any pain meds.
I was miserable and in "horrific , couldn't lift my head off the pillow without puking" pain. My doc convinced me to try the fentanyl patch because I am a Mom and it wasn't fair to my kids. I have remained on it ever since and can be out of bed 1-2 hrs. at a time. I have had a very slow titration because I am a lightweight and initially if the dose was too high got a horrible headache(different from my pressure HA and in a different location)and nausea. I recently was given the suckers for breakthrough and got really panicky when I began to have more head pain when I used them for more than 4-5 minutes. I thought my meds had stopped working! My pain doc (love her!!) told me it was a rate of delivery issue and that many patients especially those with IV or intrathecal pumps can get worse pain if meds are given too fast or too high. Same goes for any dose regardless of delivery mode if given too rapidly or too high. She said some people are much more sensitive because of their metabolism. I am now VERY careful to not overlap patch EVER and use sucker very briefly(It works within 1-2 minutes). I can always tell when I am getting what I call an overdose HA vs. a worsening of my chronic leak HA. Not sure if this will help you but I thought that it was an important lesson in pain management for me. I don't have any experience with hives except at my patch site which was alleviated with a pretreatment with an antihistamine spray on the skin before each patch. God Bless you , hang in there! If people only knew how much suffering is involved in this disorder they would get the research money flowing.
CSFChallenged

[horizontal handmaiden]

CSF Challenged, thank you so much.

Your own experience and information with pain medication addresses at least one question I've had ... about the amount of the medication going into one's body possibly contributing to the reaction. The Fentynal patch prescribed was 75 mg which I understand to be the lowest dosage, the beginning dosage so to speak; after the first allergic reaction I was told that blood tests showed I was not allergic just had an extraordinarily high level of inflammation in my body (well, duh! ICH, anyone?), and so was advised to take two Benadryl at the time I placed the patch on, this did no good whatsoever and my allergic reaction was much worse; ditto prescribed tablets of M.S. Contin, methadone, Kadian, Dilaudid, et al., and add serious upchucking and increased intracranial hypotension to some of those experiences. I see my critical care specialist this week and will discuss some of what you have shared/learned from your pain management specialist in the event it prompts him in some new way.

I am sorry your children have had to experience your situation, and very glad to learn you can be vertical for brief periods of time -- that must be the yippee experience in your day! My own son had just turned 16 when I became horizontal and I have needed to view my illness from his perspective rather than my own to adequately serve his darling little person. We have lived as just he and I since he was nine months, and so he really only had me in the home, as a parent. There was a host of close friends and our fantastic family at church who have never failed us for one need or desire, yet as my son was shuttled here and there over the years to live with this family and another, I still remember his plaintive voice saying to me one day on the telephone when I was again at UCSF for an extended period, "But mom, she's nice and everything, but she's not my mom ...". I pray you are given the strength and courage to meet the oh-so-important mommy needs and desires of your children despite the stark reality of your physical condition.

h.h.

[Jaded1xx]

HH, I'm so glad you brought this up! When the pain is horrific, I end up at the ER where I usually get a shot of Toradol and 2-3 mgs of Dilaudid (I know -my tolerence to narcotics is freightening!). The pain does improve but I notice the pressure in my head is TONS worse. That is also when I start to hear strange noises that seem to come from the back of my head - kind of like a crackling noise that resembles pop rocks or something. Also, the "whirring" sound is MUCH worse, as well as the "everything sounds like it's being funneled through a fan". They do say that narcotics raise intracranial pressure, but the symptoms are SO much worse! Has anyone else had an experience like this?

Christy

[CSFChallenged]

HH.

Were you already opiod dependent when they tried to start you on the duragesic patch and was it by a pain specialist? I started with my neuro, but after 1 year it was clear that I needed a pain doc who understood all the subtleties of pain management. With my neuro, I had tried vicodin, T-3s, morphine and some others and they all made me puke or get a worse HA. I never took any of those regularly though because I was pretty anti-meds. When my doc basically begged me after 2 yrs to try the patch, I actually started on a 25 mcg patch and got very sick from that( had to use an old hospice trick reserved for frail little ladies less than 100 pounds to decrease exposure to less than 25 mcg's) Now they actually have 12.5 mcg patches(so don't need the hospice trick if you are a lightweight). If one has problems with HA and nausea side effects you may benefit from a much lower starting dose with a very slow titration. I can only increase my dose by 12.5 mcg at a time or I get pukey and get the "other" non leak Headache. I also have to change my patch every 2 days or get withdrawel symptoms. I have only been to the ER once(in 4.5 yrs) for intractable pain (also had paralysis of left side, thought I was stroking out, not a good day.) Heating pads, hot weather, and fever can overdose me so to speak and give me those undesirable HA SE and nausea. Without this medicine I would be beyond 10/10 on the pain scale daily. With it, at my best I can be a 3-4/10(couple times a month ) and most days a dull roar at 5-6/10.
I applaud you for your ability to be a single parent with this. It is very hard to act like one is not in pain. I do have the help from my husband but I feel he is getting a bum deal. I usually get my kids on the bus in the am , then lie back down from 7:30am to 3:00pm and then get up to get them off the bus, do homework and dinner and then back down). I have someone clean and do chores and laundry several times a week. I kept trying to do it myself but my house was a disaster and I became quite worthless. I don't drive much because once I am up past a half hour or so my vision is blurred, my hearing goes and I can get stuck and not able to get home, not to mention the pain and pressure become quite unbearable. I generally get a yearly MRI and see my neuro 4X per yr. and my pain doc monthly. I have toyed with again seeking more opinions, but have decided that more holes could only make me worse and I don't think I can take one more oz of worse. Call me a chicken, but that's where I'm at. All my providers have agreed. My last MRI this past summer was the worst I've ever had, the meningeal enhancement made everyone stop, and suck in their breath. It had actually gone away for a while. Funny, no change in symptoms despite what my films looked like.
Hope some of this helps. My quality of life has certainly been better because of the pain management, even though it took me some time to get there.
CSFChallenged.

[horizontal handmaiden]

CSF Challenged, I was not opiod dependent at the time of the prescriptions, had only sporadically used Vicodin E.S. for the spinal discomfort in the fourth and fifth years of this condition. It was my internist/critical care specialist (a man who is tremendously sympathetic to my situation) who prescribed the Fentanyl patch and it was his staff that worked the follow-up experiences with me. After the allergic reactions, the same office prescribed the M.S. Contin and at that time referred me to pain management, saying it was time to do that because of the opiod status of the M.S. Contin. My friends and I thought, great! Pain management! Why didn't we think of that sooner? That referral three months ago is what led to the messy trials of methadone, dilaudid tablets, etc.

Thanks for sharing your actual dosage amounts and personal experience with morphine; I will explore this further with the doctor on Wednesday because perhaps we could try a lower-dose patch ... although, I am VERY hesitant to do this because of the severity of the ICH implosion. (I weigh 115 by the way.) The hives are awful on the body as well and spawn an interesting inner emotion -- a feeling of "rage" -- an emotion which I've never before experienced. Then, once the hives begin to dry up, the rage disappears and Suzy is all normal again. Weird. I guess that is a narcotic (opiod) response?

Perhaps I will ask to be referred to another pain management clinic. I think you are spot on to remind me of this.

I am a Schievink patient by the way, he did my second open spine surgery in late 2003 to patch four tears and he's done multiple CT/myelograms and cisternograms on me, as well as all the other usual suspects. Since I am a couple of hours away from Cedars-Sinai, I am under local care with a combo neurologist/neurosurgeon and then this internist/critical care specialist. The new neuro placed me on a beta-blocker for six months; his theory is that by reducing the heart contractions, the CSF contractions are in turn reduced, which theoretically puts less pressure on the dura membrane ... thus allowing it to spontaneously heal. I don't hold out any hope for this trial whatsoever for I've got too many sponanteous tears for too long, but I agreed to "go with the flow" for six months. And if you could see the expression on my friends' faces ... they get so jazzed by anything that might help me, it makes me want to try just to please them in some small way.

Thanks again. I'll update this post if the doc has anything enlightening to share on Wed.
h.h.
----------------------
Christy, hello! :)
As to noises in the head, yes, indeedy! Mine is like a whooshing noise, something like waves lapping on top of one another on the beach shore ... the worse my ICH during the day, the louder the whooshing; this seems to be much like what you are describing. And of course the continual ringing in the right ear which becomes more like a siren as the ICH increases. I see from another post you are on Norco. I hope you continue to receive relief, even for short periods and/or in small amoutns. Any relief is good; I always tell my friends, "If it will just go down a notch, that would be so helpful ..." and boy do I mean that! Blessings, h.h.

[CSFChallenged]

HH.

Yes, I would be very, very hesitant too after the experiences you have had. Yikes, I have never heard of rage with narcotics as being normal. The one time I was given dilaudid, I passed out cold and had respiratory depression. They had to give me something to speed things back up. I was then given a script and told I could only take 1/4 of a 2mg. tab. for emergency and I've never touched them since. I do remember reading in your posts in the past that Schievink was your Doc. He was very kind to me and reviewed my films in the beginning. Early on, I had this rescue fantasy that somehow if I could only get a private jet and go see him, he could fix me and all would be well with the world. Too far to get there from the Midwest.
So, did you have hives all over with all narcotics or just the patches? That just doesn't sound good. I recently tried a liquid calcium supplement(developed osteoporosis from the bedrest and steroids) and got hives, giant wheals and welts all over, not comfortable in the least. With the patch I found them all around the patch and spreading outward, but fairly localized to that area. I now use a flonase like spray on the area before the patch and voila, not a single baby hive.
Interesting about the B-blocker. The CSF pressure is suppose to work in parallel to your blood pressure which makes sense. I clearly see that relation on a day to day basis. When my BP is down(from dehydration or otherwise) my head is much worse. For a year I did weekly IV hydration because of this. So if your BP is down, your CSF pressure will be down and theoretically that should decrease turgor/wall pressure on your dura. This could potentially allow healing. HMMMM... The only down side is that your head may feel worse in the process if decreased pressure means more brain sag and more traction on pain sensitive structures, cranial nerves and brainstem.
I see my neuro next week and must finally address my newest issue. I think I have developed a chiari malformation. I have developed severe issues with swallowing and vertigo. I can get in about 5-6 bites and then nothing liquid or solid makes it. I have to lay down about 1-2 hours before food will pass again. Weird Huh? I now weigh about 103(used to be 125) Have you ever had this problem? Do you have constant pain and pressure in your head?...back? Are you able to work, drive etc?
CSFChallenged.
PS. My 10 yr old son suggested last night that they implant magnets in my brain and then fit me with a very cool magnet hat, that would lift up my brain and decrease the brain sag. Brilliant!!! How come the docs don't seem to get the physics of this thing? I personally am looking forward to dementia as the weight of my brain will decrease and voila less sag! Ha Ha!

[horizontal handmaiden]

I love that! Magnet hats! Too cute.

Yes, Schievink is a super guy. Whenever he would walk into my hospital room after a new admission, his first words were always to ask after my son's well-being ... he seemed sympathetic to my son's tough time in accepting and coping with my illness.

The hives were all over my body: legs, arms, abdomen, back, but were significantly worse with the morphine patch than with the morphine tablets. The strange and unusual "inner rage" emotion would fill up my body and then suddenly evaporate like Tinkerbell's magic wand once the hives stopped breaking out anew, say after three or four days.

Have been a leaky lounger since February 2002. I am, however, very grateful for the ability to have some mobility within my four walls, that is, the ability to do my own self-care activities such as bathroom, shower, microwave meals, answer the door, that sort of thing. My "better" days I lie on the living room sofa for several hours and enjoy the expanse of the living room, otherwise my little security blanket is the bed. The ICH worsens, as you well know, with each and every get-up (brain gets angry when you make it play the vertical game!). And then I have episodes -- about half of my days in any given month -- where the ICH is in what I term, "horrific mode" upon awakening; I remain glued to my sheets during those episodes, doing nothing but restroom, my fabulous friends tending to every need, treating me to tea and toast. After four or five days, the unbearable ICH begins its slow descent, bringing me back to a more manageable level. Suzy's silly spiney stuff, ya know!

I do not have an inability to swallow or the vertigo. Gosh, I am sorry for your trial in that regard, as well as the suspected chiari malformation, which must surely be a result of the brain being where it shouldn't all these years of your condition. Guess you know that already.

Leaky lounger aka h.h. over and out!

[waterlover]

Hi HH and CSF Challenged,

Waterlover here...aka....ccnut. I wrote a note on here last night and poof...it disappeared....so here goes again. As I read your posts you both are really the definition of inner strength. I know how hard this condition can be (personal history of almost 2years bedridden), so I thank my lucky stars I have so much function back. You both have similar inspirational spirits...really!! And, CSF Challenged, despite every minute of horridness in this that you may swear daily at, as best as you can, you still show so much enthusiasum for life.....it seems HH, the same goes for you. Just so you know, CSF Challenged, I think you have singlehandlely stopped any whining that may exude from my mouth. Okay maybe once in a while.....like when I lose a message on this board.

Anyway, HH, your beta blocker recommendation caught my eye. My latest neurologist has me on a beta blocker, Inderol. He choose that one because it is the only one that crosses the blood/brain barrior and can serve a dual function in helping arrthymias and head pain/pressure. I developed some benign arrthymias early on in my leak (no cardiac history what-so-ever). And its quite clear that they are somehow connected to my leak....headpressue worsens greatly with my arrthymia and I'm suspect that when head pressure is really bad they provoke the arrthymias and tachycardia.....completely separate from any anxiety etc. that may envelope from the arrthymias. I can be as perfectly serene as I can be with my heavy head, then, boom an arrthymia occurs. I get rather irritated when docs attribute them to anxiety etc....though no doubt anxiety ensues. I've been worked up by cardiologists and electrophysiologists and until last fall they treat them as a separate entitiy from my head. (Didn't you know all of our parts are disconnected). However, I will give this to them.....though they say I could benefit from an ablation, they aren't too psyched (nor am I) to do one because if my low csf did initiate/provoke them them, then ablations are not the answer.

Now, forward to last fall, about year six and half into my leak, quite functional, still some restrictions but head still leak-like heavy and arrthymias still present. I find this new neurologist who has a strong cardiac interest and with how the nervous system is related to the cardiovascular system and other systems in the body (he was on GMA few months back promoting his theory that you can scare yourself to death.....when the Enron guy died just prior to his trial). Anyway, he doesn't believe I have a leak anymore but strongly believes my dura/CNS was "turned on" leaving me with this head pressue and arrthymias. He has no doubt the arrthymias are connected or initiated by my low csf. So his premise for the Inderol was to help "turn off" the cycle of heightened sensitivity brought on by the prolonged leak, while helping the arrthymias too. Your neuro's premise of decreasing cardiac output to help heal the leaks is intriguing. I applaud him for at least acknowledging the connection of cardiac output and csf flow. CSF challenged and I have debated this connection and she has found information showing a compensatory tachycardia when csf is decreased....probably from the Monro Kelly phenomena.....and the brain wanting to maintain a constant volume of total fluid, so cardiac output increases to increase blood flow to brain. Another neurlogist of mine relieved my worries that this increased blood flow is not a stroke risk....not the same phenomena.

Anyway, HH, what beta blocker are you on and how much are you taking? I'm on a low dose of 20 mg/ 3x/day. Side effects can be not fun...though mine seem to have subsided some. I could probably benefit from going up in dosage, but not thrilled with knowing the side effects. It has taken an ever-so-slight edge off my head pressure most of the time and has helped the arrthymias, though they are stil there.

You guys top my prayer list.....and also the wish this blessed condition will one-day be a thing of the past. Take care, Water lover

[horizontal handmaiden]

Hey, ccnut aka waterlover, nice to hear from you! You have been so helpful to me in times past.

I'm on metaprolol, generic for Lopressor, 50 mg b.i.d., a six-month trial. He himself is on a beta-blocker to help what he described as "hand tremors." The side effect I noticed right off was a significant increase in fatigue which I did not appreciate, however after a couple of weeks my body seemed to asimilate the medication and that fatigue folded itself into that which my neuropathy medication induces ... I have fairly severe neuropathy throughout my body due to this condition.

Appreciate the information you passed along about the use of beta-blockers; intriguing, as you say. Last November, I requested referral to a different neurologist as the one I had did absolutely nothing except request repeat visits every six weeks and then get re-acquainted with me at each visit as though I were a new patient! Yikes. So I am glad to have this new physician, a combination neurologist/neurosurgeon whom I met three years ago in a local hospital and who is responsible for finding Dr. Schievink for me. Right off, he impressed us with his sensible, take charge demeanor; my friend and I left there thinking, Well, what do you know? He actually had an idea! :cool:

h.h.

[waterlover]

HH,

Thanks for the beta blocker info. I was on Lopressor prior to my Inderol, at 25 mg 2x/d and I didn't notice a change in my head pressure..... though did help arrthymias some. If you don't see a big change with the Lopressor you might want to ask about Inderal.....my understanding... specifically because it does pass the blood brain barrior it can act as a better headache prophylactic while still exerting the cardiac effects. But,working in accord with your neuro's premise you still may see effects with your Lopressor....hopefully so. Always, my best!!--Waterlover

[horizontal handmaiden]

CSF Challenged, the doctor visit last week yielded the following plan: Begin Carafate 3x a day to allow healing and proper care of the stomach lining; then use Phenergan as necessary for the upchucking which comes with intensified ICH; finally, use Dilaudid 4mg tablets as needed. The doctor confirmed that the I.V. dosage of Dilaudid is 2mg (often it takes more than one infusion to effect a manageable reduction of the ICH). The thinking for this new plan is first of all, not to take Dilaudid around-the-clock (as the pain management physician had previously prescribed it), and secondly, the hope is that single tablet dosages ... or perhaps two dosages ... will do the trick. I have begun the Carafate which has the nerdy side effect of needing to go to the bathroom every 30 minutes. I am hesitant about the Dilaudid trial due to my last experience, but the question presents itself, Was it the accumulation of too much Dilaudid in the body that caused the ICH to implode? I'll never know unless I give this another try.

Your thoughts are welcome, as are that of others.
h.h.

[Concerned Gal]

Just thought to comment on the hormonal element of your post (ie you were on HRT).

There is definitely some linkage I think between leaks and hormones.

Just an observation.