Update: Low to High

[mindi]

Hi everyone!

I haven’t posted for a while, but I’ve been reading the boards every day and keeping up on everyone’s progress. Welcome to all of the new people and hello to all of you who have been here a while! My heart gets heavy every time I read of a new member’s experience, and restless when I read of a long-term member’s ongoing struggle. I’m always thinking of you and hoping for better days for everyone.

I thought I would post an update on my progress since I haven’t in a while…

I’ll begin with a brief re-cap for those of you who don’t know my situation…

I had a CT myelogram done in May of last year which left me with a massive spinal headache. None of the 3 blood patches I had relieved my symptoms for more than a day. I did bed rest for the first 6 months, when one day I had a change in symptoms which lead me to believe I am now experiencing high-pressure. My head is now worse when lying down (I now sleep propped up), my head pressure/pain patterns have changed (pressure changed to front of head/behind face, pulling/heaviness at back of skull is gone, and although I still have all-over pressure, it’s different now), I began experiencing a pulsating sound in my ear, and my symptoms get better as the day goes on, the longer I am upright. It is my understanding that it is possible I either switched into high-pressure naturally (as my body began over-producing csf to make up for the loss of leaking) or that possibly high-pressure developed due to my 3rd blood patch. (Other possibilities I’ve thrown around are that the high amounts of caffeine I was drinking when I was on bed rest increased my csf production or that the high amounts of Vitamin A I was taking contributed to high pressure. –Didn’t know how high they were at the time and later read how high amounts of vitamin A can increase intracranial pressure.)

I was extremely excited when this switch happened, as I thought it would just be a matter of time before this was all over. Well, it’s been almost 6 months since then and I’m still battling this debilitating pressure headache. Although it’s lessened in severity, it’s still debilitating. I’m assuming it’s high-pressure, but sometimes I wonder if I’m all wrong. However, I can’t deny that it definitely gets better when upright and worse when down, gets better throughout the day the longer I’m upright, has different pain patterns, etc., which are all exactly opposite than before.

I began taking Topamax last week, but only 2 days after taking only ½ of a 25 mg. pill, I experienced blurred vision and pressure behind my eyes, so had to discontinue. (I guess blurry vision is one of the symptoms you aren’t supposed to mess around with while on Topamax, as it can cause vision loss.) So I stopped the Topamax and started Lasix today. I realize Diamox is the mainstay medication for high pressure, but I’m only seeing my GP at this point while I’m waiting to see the neurologist (mine retired during this process), and he seemed a little hesitant prescribing the Diamox, so we thought we’d try the Lasix first. We’re taking baby steps together. He actually started me with Hydrochlorothiazide before the Topamax, (didn’t do a thing), and is now willing to start on small dosages of Lasix and has actually re-considered the Diamox if the Lasix doesn’t help. (By the way, can I just say I have never had a doctor be so incredibly respectful! He actually respects the research I’ve done and wants to figure things out with me. He also knows nothing about any of this, so while trying to educate himself, he’s kind of letting me take the lead on this a little, and trying to be responsible in his prescriptions at the same time. I have nothing but gratitude and respect for this man.)

Anyway, do any of you who are experiencing high-pressure have any insight?(CSF Challenged, Holly, Laura’s DH, Wobbles, etc.)? What is your experience, if any, with Lasix? If you're taking Lasix, what dosage are you on?

I know Dr. Schievink usually prescribes both Diamox and Lasix together, and I’ve read journal articles which describe this as the most effective means of reducing intracranial pressure. I also know sometimes Topamax is prescribed when Diamox isn’t well-tolerated (or Spironolactone, etc.). However, have any of you ever been on Lasix alone? I’ve read that Diamox can lower csf production by up to 50%, and Lasix approx. 25%. It has been noted that together they can have a 75% reduction (although numbers vary). I’m hoping that Lasix will have some effect by itself, but I may need to start Diamox. Thanks in advance for any thoughts/insight/experiences you can share.

Anyway, just wanted to post to say hi, and that I’m still out here and still suffering. I’m still pretty much housebound and can’t do much (can’t drive, get dizzy/nauseous during car rides, wear earplugs when around more than one person, have to sit most of my day, head gets worse with mild activity, etc.) I still read the board daily, so am updated on all of your conditions. I just wanted to say I think of all of you every day and am still hoping for your healing!

Mindi

[Robbysmom5]

Hey Mindi.
Curious, did you get dizzy/nautious on car rides when you had low pressure? or is this new with high pressure?
While Rob never liked car rides when leaking & sealed(?) - before March 3rd he always lied across the back seat, now he sits and complains much more of driving habits and feeling sick.
Good luck on the Lasix!!!!!!!

[mindi]

Hi Jeanne,

Yes, I definitely got nauseous during car rides while in low pressure as well, but I think I notice it more now. I, also, used to lie down in the back seat, and I’m thinking that perhaps by lying down it curbed the nauseousness a bit. I now sit up and ride and am careful to look straight ahead, but have to “let myself settle” for a while after the car stops before I get out. Anytime I go anywhere, I get there 15-30 min. early and sit in the car before I get out and walk. It helps tremendously. (The first time I went to the doctor, I didn’t do this, and could barely function when I got in there. I was like a ragdoll and wasn’t able to talk to him very well. The very next appt. only 2 weeks later, I sat for 30 min. prior to going in, and was so much better!)

Good luck on the Lasix!!!!!!!

Thanks! I'm hoping it will bring some relief! I also figure it will be somewhat diagnostic if anything...

[healing@last]

Hi Mindi

I started taking the Topomax on Wednesday last week after reading that Laura’s DH has some success with it. I had some in the cupboard as I was prescribed it for my so called migraines last year - you can imagine what it did to me while I was leaking so I was reluctant to try it again. Anyway, I took 25mg each day and didn't have any reduction in symptoms, in fact my run of good days turned into average to bad days while I was on it - medication or just co-incidence - hard to tell. Anyway, I went off it after 4 days as it messes with my thought processes - my thoughts get confused and it also changes my personality - my girls call them my angry pills. Things are tough enough without adding chemically induced moods into the equation! So I'm back to battling the high pressure on my own again. The day after coming off the Topomax - yesterday - I had a good day with normal pressure most of the day which is always such a relief.

It is so nice to find someone who is functioning in the same kind if time-frame that I am. I hadn't realised that you were still so debilitated by your headaches/symptoms. I too struggle on an ongoing basis to get through daily responsibilities of looking after my children. I need to return to work - many bills to pay - I was working until the second puncture in Sept last year - but I'm a teacher so I need to be well to look after a class of children.

My biggest change has been the start of the dizziness which causes me to feel nausea. I too have the strange vision and feelings of being unsteady when my pressure is high and I have been in the car. I think that the vibrations affect the fluid in my middle ear which causes a kind of sea-sickness. I know my pressure is down when I feel more grounded - if that makes sense. I attempted a 6 hour trip to drive my kids to a holiday destination - silly I've been told by everyone - but I find it difficult to accept that I'm not a well person - rather stubborn like that - anyway, only got 2 hours out of town and started to feel like I was floating - very strange vision and very high pressure in my face and had to call for help.

My symptoms are very different now from the low pressure ones even though when you write them down they sometimes look similar - they feel different though. Some days I find these symptoms harder to cope with than the leak symptoms. They are so fluctuating and unpredictable and I find the dizziness and nausea hard to deal with. I did a summary - I keep a diary as I'm sure you do - and I found that in the last 40 days I have had 10 bad days (days when my pressure is very high and I'm dizzy, nauseous, have face & neck pain and have very few hours when the pressure drops - on these days I'm non-functional) I had 11 average days (days when I've had hours when the pressure is unpleasantly high with associated symptoms and times when it drops to a bearable level) and 19 good days (days when I feel human - not symptom-free, but very manageable pressure and hours when I feel normal) This is an improvement as in Feb I only had 3 good days! Because I feel so bad on the bad days, it gets hard to believe that I am fixed and often feel like something else has to be wrong - from all of the tests, dyes, patches etc I have been exposed to - but then the symptoms just lift like mist before the sun and I feel human again and I know that there is only one explanation for the radical change that can occur - changes in CSF pressure.

Must get some things done around here – not feeling too bad today :)– get a headache from sitting in one place too long though. I get so tired sometimes from the symptoms but know that if I sleep, lie down I will pay for it in pressure problems for hours afterwards to I try to stay upright as much as possible – still sleeping on my stack of pillows, but not feeling awful on waking for the last 2 weeks which is a nice change.
Going to the neurologist tomorrow – will let you know what he says – interesting info about the Diamox changing pressure so radically – my neurologist told me only 8% change – makes me wonder about his info?? He seems really good – treats me with respect and no arrogance too – seems at a bit of a loss as to how to help though.

[healing@last]

My rollercoaster has hit a downhill run again unfortunately and I have been battling with high CSF pressure for the last 3 days. I usually handle the first couple of days of being unwell again mentally, but things begin to crumble by day 3. I think it is the uncertainty of when/if this whole nightmare will ever end that gets to me most. I think too that once you have been a leaker you always worry - despite your symptoms not matching the diagnosis - that the leak is back again. While you have a CSF leak you just wish for the day that your leak is sealed thinking that that will be the end of the nightmare journey and you will have your life back again - I surely never imagined that I would be living with these problems 5 months after a successful blood patch. You read about instant relief and that is what I expected when the leak was sealed - I know now that that only applies to acute, not chronic, leakers.

Have been back to my neurologist, but he didn't have much to add - just wait and see what the next 8 weeks brings until I see him again. Did advise me to lower my pillows from 4 to 3 which I did and woke up feeling awful - nauseous with stinking HA - each morning since. Went back to 4 last night, but still feel bad today. This condition - whatever it is - seems to have no pattern for me - comes suddenly and leaves just as suddenly.

So I'm trying to stay strong emotionally for myself and for my family, but it is very challenging as you all know. Difficult to explain how scared one feels to anyone who hasn't been in this situation. We all just want our lives and our 'old' selves’ back - the people our families knew and loved, a state, which despite our best efforts, seems to be out of our reach.

Hope you all are feeling better than I am - better days will come - soon I hope!

Tracy