Guest ANCY Posted June 29, 2017 Report Share Posted June 29, 2017 Over the last several months I have been dealing with osteomyelitis of the L4 and L5 vertebrae and discitis. This has affected my "normal" dysautonomia symptoms and now dealing with blood pressure that is going high (which I'm not used to) as well as dropping quite low and causing syncope. I know there are many things playing into this but just wondered if anyone had any tips on dealing with this? Dealing with high blood pressure is a new thing for me. I am on florinef 0.1 mg 2 x a day every day as well as midodrine 10-20 mg 5 x a day as needed, also clonidine 0.1 mg 3 x a day as needed for bp > 155 systolic. If you would like more detail please continue reading: June 2016 Open J tube placement with wound dehiscene resulting in 6 month long wound infection treated with 2 rounds of levoquin and 3 months of bactrim with little to no response. November 2016 acute kidney failure resulting from hernia preventing adequate fluid intake through j tube. PICC line placed for hydration despite concern of active infection and previous history of multiple sepsis events. December 4, 2016 sepsis with 3 bacteria identified on cultures, also meningitis. Treated with 5 weeks of IV antibiotics during which time abdominal wound infection also resolved. January 30, 2017 large abdominal incisional hernia repair with dissolvable mesh. February 1, sepsis 3 days after surgery while in the hospital 2 bacteria identified. Treated with 2 days iv antibiotics and 2 weeks oral Levaquin. Backnowledge pain starts and progresses gradually. February 26, Back pain becomes unbearable and CT at ER shows changes to L4-5 vertebrae and concern is raised about osteomyelitis. Transfered to a higher level of care hospital where MRI was preformed. Unable to diagnose and sent home under observation by infectious disease dr. March 20, hospitalized due to increased pain, urinary incontinence, sensation changes in legs causing concern for compromised spinal cord or nerve roots. Repeat MRI shows progression but no compression of spinal cord. First Biopsy of L4 is done and cultures come back negative. May, Cardio prescribes clonidine because of elevated blood pressure believed to be a result of the back pain. Blood pressure continues to widen in range bouncing between 170/120 and 70/30. serial scan MRI shows significant worsening of vetebral bodies and disc height loss indicating discitis along with the presumed osteomyelitis. June 8, biopsy of L4 L5 reveals chronic osteomyelitis with osteosclerosis confirmed by pathology, still no pathogen identified. June 10, diagnosed with Strep throat and placed on amoxicillan for 10 days. June, Started on bactrim for chronic infection of the bone. Antibiotic is causing increased nausea, vomiting and diarrhea which is impacting tube feeds resulting in lack of nutrition, weight loss, and dehydration. Waiting to get in for a second opinion for Infectious disease Dr per recommendation of several treating physicians and caregivers. Neurologist is seeking a way to get ivig covered (doing an emg to look for demylinating neuropathy) because we already know it helps and he believes it could aid in treating the osteomyelitis. Neuro is also considering a trial of northera to try and get a better handle on BP and syncope which is almost a daily occurrence. Thank you so much for your time and whatever ideas you can share! Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted June 29, 2017 Report Share Posted June 29, 2017 I'm a new member here but a long time reader, and I'm so sorry you've been through so much. I developed OI/POTS nearly 3 years ago and before that my blood pressure had been low/normal. Since becoming ill it has been high (yet I am still presyncopal most of the time unless I do things that would normally raise BP like elevating my legs) When I had a tilt test it went up to 170 over around 114 when tilted up then gradually came back to it's baseline although I felt I was going to pass out. Earlier this year I went to A&E because it was 223/120 -at the same time feeling unwell with headache and presyncope. This is contrary to what a lot of people would think, but I actually think my BP goes high the more hypovolaemic I am, and that when my bood volume increases, sympathetic activation switches off and BP comes down. There are some papers online by Dr Bell a retired ME doctor which talk about this. I can't take florinef as that seems to increase sympathetic overactivity and cause headaches, but hydration and desmopressin help me. I wonder if your BP is going high because you are also dehydrated and not getting enough fluid in, so your sympathetic system is in overdrive? I do hope things turn around for you. B x Quote Link to comment Share on other sites More sharing options...
Crumblv Posted June 29, 2017 Report Share Posted June 29, 2017 I can definitely relate to your experience--I too am confused about why I feel pre syncopal and check my BP to find out it is high--this is particularly worse in the mornings--it takes me several hours to be able to function--I am trying to walk at least 1/2 mile a day and find that as I walk the symptoms improve --possibly to better circulation? Are you working on your exercise and diet routine to see if that helps at all? Quote Link to comment Share on other sites More sharing options...
Crumblv Posted June 29, 2017 Report Share Posted June 29, 2017 Dear Ancy! I did not see your original post! Oh my goodness you have really been through it all! I am a pharmacist working in home infusion and have taken care of patients similar to what you are experiencing from an illness perspective. You have so many comorbidities that it would be difficult to isolate the primary cause of your symptoms--this will be a challenge for your cardiologist and neurologist to sort out! You really need an accurate account of your input and output to ensure you are not behind on your fluids--this would include your enteral feedings and any other fluids you are taking in--are you able to take oral fluids at all? This information would be very helpful for your MD's as they assess the reason for the syncope. You have been so ill with lots of losses and antibiotics that it would be reasonable to think you are chronically dehydrated. A 24-48hr record of I/O's might be helpful. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted June 29, 2017 Report Share Posted June 29, 2017 Hi Ancy. I'm so sorry you are going through all of this. I don't have much wisdom to pass along, but I had the low BP which morphed in to intermittent high BP. I was also on Northera. The doctors have now taken me off of it. Be careful because the Northera will increase the high BP too. The Northera (Droxydopa) converts to norepinephrine. For me, my norepinephrine levels became too high and the docs decided it was counterproductive to give more meds to try to lower my BP. I was also on Florinef and a beta blocker, but nothing more for BP. I felt better on Northera, had more energy and could do more, but the elevated BP scared me. My family has a history of stroke. Do you know if your norepinephrine is low or are they just going on your BP? Do you have EDS? Have you had a vertical MRI of your neck and brain stem? With your other vertebrae issues I'm wondering if you have some kind of craniocervical instability that impacts you brain stem and ultimately your BP. Northera is a good med. I don't want to scare you away from it. I just wanted to see what else they were looking at to make sure all the bases are covered. Northera is a big gun and can be dangerous. I'm betting your docs have considered all of this before they recommended it. I don't regret trying Northera. I wish it could have been the solution for me. I hope they get to the bottom of this for you and you get some relief. Kim Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted June 30, 2017 Report Share Posted June 30, 2017 Bombsh3ll- Thank you for sharing your story and compassion. I hope you find the forum helpful as I have. While I understand what you are saying I don't think it is true in my case because when I pass out and they take my blood pressure I am usually around 50/20 if they can get a reading at all. I have gotten critically hypovolemic before (ended up in ICU on dopamine) at that point they also could not get my blood pressure up over 70s/40s. This is partly why having high blood pressure is so different for me... While I'm not critical right now I am sure that, yes, I am fluid depleted. Thanks so much for your input! Crublv- Exactly! The picture is so muddled right now, and I didn't even share everything... I can swallow fine however my stomach doesn't tolerate much, especially right now... Oral volume is hard to achieve. I am 100% sure that I/O is a problem, some days are worse than others but every day is a challenge. For example... Last 24 hrs: only 30 oz through the tube (normal would be 80+) and maybe 6 oz oral. Vomited 3 x (I'd estimate between 6-10 oz each time) and diarrhea x 4. Urinary retention makes it difficult to tell where I'm at there, only urinated once... I will try and keep a more accurate record I/O, thank you for the advice it may indeed prove helpful. I don't know what they could do to help at this point though as ID doesn't want any long term IV... KiminOrlando- Thank you for sharing your caution/experience about Northera. Much of what you said is the reason I am not already on Northera. My neurologist is doing a research study with it so I've also read A LOT about it. We've decided the study is not right for me but still considering a possible trial of the medication. They have not tested my norepinephrine, treating based on blood pressure. I have Joint Hypermobility Syndrome Geneticist said if I went to another geneticist they would have diagnosed EDS but he would not because my skin is to "normal". My mother and sisters also have a diagnosis. So yes and no... Have not had an upright MRI, I believe they are blaming the vertebra trouble on the infection. It is also difficult for me to get an MRI because I have a pacemaker and they have to take special precautions and only to be done if absolutely necessary. They did do a supine c spine MRI in December when I had the meningitis which showed degeneration and early spondylotic changes to the vertebra but no indication of infection of the c spine. We think the changes may be from the years I spent passing out 20+ times a day with my neck dropping uncontrolled. That's just a theory though... I hope you do find something that Will be of help to you, even if its not Northera. Thank you all! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted June 30, 2017 Report Share Posted June 30, 2017 Hi, Ancy! Nice to hear from you, friend! FYI -- we have recent Northera studies published by Vanderbilt and Dr. Grubb on our DINET Facebook page. Just realized I'm not the only one juggling midodrine and clonidine in a medication routine.. it's exhausting. I have orthostatic hypertension & hypotension, plus been dealing with Low low's in the morning so I have to skip the BP lowering meds which cause a high HR and then hypertension later in the day. Its very hard to medicate accordingly. I know midodrine can cause vasoconstriction but I've been getting chest pain when I take a 5mg dose. I think its related to the vasodilation and vasoconstriction. How is your hr doing now with the pm? Hopefully it's one less thing for you to worry about. Sorry to hear there is so much going on right now -- I hope it settles down so you can enjoy your summer. Always Wishing you the best! Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted July 1, 2017 Report Share Posted July 1, 2017 Sarah- thanks so much I'll look into the FB page. That is exactly the difficulty of using both of these meds! Any tips on managing them? I new to the combo so eager for any ideas. I am required to lay down when I take the clonidine because of my history of syncope. My cardiologist was hesitant to prescribe it, said he felt wierd to give it to his patient who has the worst low bp and syncope. I feel wierd taking it lol! So far it has been ok since I'm laying down and not pushing my body while on the clonidine but of course that means more time in bed which equals more decondioning... viscous cycle lol! Heart rate is pretty managed, I had decreased the last couple months in the % of time it controls my heart but the last couple weeks it's been working over time, which means chest pain for me when it's pacing me high for hours trying to compensate... I shouldn't complain though, I'd hate to see the state I'd be in without it right now... I hope you are enjoying your sunmer, I've had some nice moments. Sitting with my family on the porch watching the sunset with the horses and goats frolicking in the foreground is very relaxing! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted July 1, 2017 Report Share Posted July 1, 2017 Hi, Ancy! I was just thinking -- northera is much longer acting than midodrine, so you'd have "less control" over your hypertensive episodes, as midodrine is shorter acting. Mine wears off in about 4 hours. I'm also a rapid metabolizer so it could linger longer for you and others. Something to definitely talk to your dr about though! I have to listen to my body when taking meds for the day, and like the midodrine, the clonidine wears off quickly as well. I'm still on as directed doses of Ivabradine & Florinef, but I have two doses of 3 meds, Midodrine in 2.5 and 5mg, Clonidine in 0.1 and 0.3. , Propranolol 120mg LA and 40mg tabs. So, depending on my symptoms I take the most appropriate dose. Even when I'm hypotensive I still take the 0.1 of Clonidine because it manages my POTS symptoms so well. It helps with night sweats, insomnia, tremor and flushing -- those were some of my worst symptoms before starting this med, if I don't have it my adrenaline just starts pumping away again. My doctors have given me permission to do this with my medications, if not I'd be calling them on a daily basis asking if I could take a different dose lol. I wear both my abdominal binder and compression socks, take in increased fluids and sodium on the hypotensive days. I can see how your cardiologist was apprehensive about rx'ing the clonidine -- my local POTS specialist is a hypertension specialist and brought a resident with him one day -- he said," In 39 years of practicing I've never prescribed clonidine for this purpose but it's her game changer" I'm glad you've had some nice moments this summer thus far. It sounds so peaceful and serene where you are! I have been doing rather well until recently. I went to a few concerts, been playing softball, and spending time with my family and friends. I've recently had a setback but I'm optimistic it will pass with rest and time Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted July 2, 2017 Report Share Posted July 2, 2017 That is our (neurologist, family and I) biggest concern with the Northera. Midodrine usually looses it's effectiveness for me around 3 hours, so yes, the change Would be huge. I'm glad clonidine can do so much for you! I can't imagine juggling a third, the headache of deciding what and how much... I don't think I've been on it long enough to draw any conclusions, especially with everything else going on. I do use compression stocking but currently not tolerating an abdominal binder, can't even wear my back brace as much as I'd like to... Stomach bloating has been a big issue, May be the moraphine. I hope you recover quickly and can return to your desired activities. Can be so hard sitting on the sidelines waiting for your body to "let you back in the game." Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted August 8, 2017 Report Share Posted August 8, 2017 An update for those who are interested: I apologize in advance for the length of this post... Saw my cardiologist again about 2 weeks ago and he is happy that the clonidine is still working, not changing that. I have been using some doses of 20 mg of midodrine per neurologist which cardio said is an awful lot 5 times a day but ok for short period. Pacemaker is doing well, not seeing anything new so that's good. I've been passing out more so he wants to try iv hydration once a week to see if there's any improvement with that. Especially because with ongoing antibiotics, They're causing lots of vomiting and diarrhea. Neurologist PA I saw today was happy to hear they are going to try the iv fluids, but also wants to see me off some of the meds I'm on. Going through the list though she couldn't find any to discontinue at this point so just have to juggle. Finally got in for a second opinion with a new Infectious disease doctor about the osteomylitis. The Dr wants me to add another antibiotic so that ALL of the bacteria from the blood infections are covered, and keep on them until the end of September. She Also wants me to see a Neuro surgeon and find out if they have anything to offer for the pain. Which she thinks is partly structural and putting a "cement" in the area would help with the pain. End of September she wants an MRI and if it's the same then just keep on with the antibiotics till we reach 3 months or more, she's not sure yet. If it's worse she wants the neurosurgeons to do an open biopsy to see if they can identify the pathogen with a larger specimen of bone and tissue. While she didn't change anything, or disagree with what my previous ID Dr has done, it's nice to at least have a plan, unlike before. She also said that chronic osteomylitis is harder to treat than the acute form. If the next MRI is worse there is also a possibility they will try removing some of the bone tissue, which is extreme, but She does not think IV antibiotics will reach the area well, if its still progressing. I would just like to be done with the whole thing, it's had control of my life for long enough. Well that pretty much sums it up... If you've made it to the end, thank you for listening, means a lot to be heard. If anyone has ideas I'm open to them! Thanks so much! Quote Link to comment Share on other sites More sharing options...
angelloz Posted August 8, 2017 Report Share Posted August 8, 2017 I don't have advise but I feel for you. I do believe that having a real plan in place can make things more hopeful. I think the plan sounds great and your doctors seem to be covering your bases! Hugs and healing. Quote Link to comment Share on other sites More sharing options...
Guest ANCY Posted August 8, 2017 Report Share Posted August 8, 2017 Thanks Angell oz for your support, I'm hoping my current ID will follow her plan, I guess time will tell. Hope you are having a wonderful morning. Quote Link to comment Share on other sites More sharing options...
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