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Hi to All,

I am so new to POTS and have my tilt table test this Weds. A little about me... I was a 35 y/o healthy female until I had an L4-5 epidural steroid injection, to help with a back injury I got at work. Within 24 hours of this injection, I began to have orthostatic tachycardia and a whole slew of postural symptoms that resembled a CSF leak. Every symptom disappeared when lying down. After 5 weeks of suffering, they finally did an epidural blood patch with some resolution of my symptoms, but not the postural dizziness or tachycardia. Now, it is 3 mos later and they are working me up for POTS. At first, my brain MRI showed enhanced cortical surface veins (indicating a probable CSF leak), now after the blood patch the MRI's, MRA, MRV are "Normal." So some of the doctors are saying continual slow leak vs POTS. I am only on Toprol XL at night. Supine HR 58, Sit HR 78, Stand HR 100-116, Walking totally varies from 92-120. I am exhausted, dizzy, frustrated and just "Off." Holter monitor shows only sinus tachycardia, no arrhythmias, and nocturnal hr down to 35!

I am wondering if anyone knows of a connection b/t POTS and CSF leaks? There are so many articles and blogs out there that elude that my POTS may actually be a CSF leak, but the docs who did the injection and patch wont listen (go figure). I have an awesome dysautonomia cardiologist who does think there is a connection b/t the swelling in my spine and this tachycardia, but he needs to do the full POTS workup. Like most of the posts before me, I feel worse when the barometric pressure is down, my ears ring, throb and pop (neuro wants to rule out inner ear disturbance, can't this cause POTS too?), dizziness, dead head, lack of concentration and my back pain is back and I have been off from work since the day of the epidural!!!

I give you all so much credit for your strength and positive attitudes. I hope that I can one day be as positive as you all. I am in the shock, disbelief and petrified state right now...

Any replies totally appreciated.

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Scary, I also had epidural injections in L4-L5. I had 3 in 2004 after a car accident and 1 more in 2006 following another car accident, it didn't help and I ended up having microdiscectomy surgery. My POTS symptoms started in 2009. I have read that POTS could be caused by spinal injury.

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HI TML----and welcome! I hope you can find the support you need here. ;)

If you look at my signature line I have a lot of spine issues. I know upper spine compression can cause POTs symptoms, or autnomic nervous system dysfunction. If the problem is up high enough in your spine it can affect the brain stem. If you have a CSF leak it can cause POTs secondarily. Your cardiologist seems pretty knowledgable, as many doctors won't even think spine injury/compression and a connection with autonomic system dysfunction is even a possibility.

This makes absolutely no sense if you google this, as even WE can find the connection. It looks like your cardiologist will be a good start, and hopefully he can open other doors to further investigate possible CSF and dysuatonomia connection. On Sunday I had a really bad day, and woke up with my spine feeling like it was hit with a ball bat. It made my POTs worse then usual that day, and I made a quick sudden move to get something, and my heart felt like it fell into my lower gut---I felt a big THUD. I was shot for the rest of the day. Most days I'm a mess, but Sunday was really bad.

Be careful, and take extra special care not to overdo anything. Pace yourself very slowly.

I hope you find more answers. You have my full support!

Maxine :0)

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Hi and welcome to DINET! I know what it's like to have everything change overnight as that is how mine also started, but not from a spinal injury/injection as yours. It's been almost 5 years and everyday I keep hoping that the medical field will find something to help us all in the future. As for coping, know that you will not be the same person you were, but in many ways you will change for the better. The fabric of your life will be woven with gratitude and humility for the simply joys in life. You may also find that there is strength in surrendering because it takes more strength to accept help when we would all much rather do things for ourselves even though our bodies aren't cooperating with the desire of our mind.

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Thanks for the replies and encouragment! I am totally confused and I can't make sense of any of this. I failed my ENG today, indicating a vestibular disturbance, and am going to cardio tomorrow for tilt table test... Keeping my fingers crossed that maybe this POTS is related to the CSF leak, vestibular issue or something that might be treatable, but the more I research the less hopeful I become.

Has anyone ever been able to find the right drugs, lifestyle changes that enabled them to ever work out or run again? Running is my release, and hope that I can get back to it. My HR standing and walking is the same as when I used to run at 6mph. The Toprol XL is taking the edge off big spikes in HR, but not getting it under total control.

Any questions or tips I need to ask the cardiologist? I am lucky, b/c I have a cardiologist who specializes in electrical problems and has about 30 POTS patients and counting....

Thanks again for the welcomes and sharing.

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Welcome to the group! Hope they can find something treatable for you. My POTS developed after baby #4. Don't think it was linked to my epidural in any way because it didn't really kick in for a few weeks after. I have 2 csf leaks in the past so you never know. I've had a couple steroid shots since for a similar disc bulge and it didn't seem to make anything worse.

I've had POTS just over 2 years now. I'm working really hard at getting back in shape. It's been a really slow process but I'm hoping to be able to run again. My kids keep asking me why I can't run so they provide a good incentive to keep working at it. I think if you at least keep up some activity it'll make it easier in the future once you get your meds to the right point. I did nothing for over 1.5 years. I can walk at a good pace now and I love the recumbant bike. That's been my outlet until I'm able to run again. Hope you find a some good results on your upcoming tests!!

Brye

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I cannot speak to CFS leaks or spinal injuries, but can certainly empathize when it comes to your classic POTS symptoms. Your heart rates lying down, sitting and standing mirror mine, along with the dizziness, dead head and ear troubles (do you also hear your heartbeat?)

When you take your tilt table test, make certain you are supine for the full fifteen minutes before they begin to raise you. In my case (unbeknownst to me at the time) it was for only three minutes and the initial results were skewed.

Depending on your type of POTS if indeed you have it, if blood pooling in your legs is also a symptom as it is in mine, you should be able to walk easier than standing in place, at least for a few minutes at a time, depending on the severity of your symptoms. In my case I can walk on the treadmill at 3mph for up to ten minutes and my heart rate will stay between 100 and 120, but the moment I stop and stand in place it will jump up 20 or 30 bpm and that's when the dizziness and headaches begin. I hope this can work for you too.

Good luck.

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I am so sorry to hear of your situation. I am not aware of a specific link between epidural injections and POTS, but I can see where there could be an association with the CSF leak or any type of "neurological trauma" that your body perceived from the procedure or the aftermath. I am glad that you have a thorough cardiologist working with you, but frustrated that the epidural doctors have written you off. I have been affected by this condition for nearly 8 years, and I send you strength and positive thoughts.

Broken_Shell :rolleyes:

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Thank you everyone for the replies. I failed the tilt table test, but my dr said that although it looks like I have POTS, I don't meet 2 of the criteria. He wouldn't give me those criteria at all!!! He said that POTS can go away as quickly as it came, but I don't see this happening. How can you go from being healthy, to non-functional overnight and then expect to go back to normal after all this de-conditioning? I am feeling hopeless that I will have to learn to live with these ill feelings. All we all want, is a specific end date!!!

Thanks again for the warm welcomes and well wishes. Back at ya!

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Interesting idea about spinal trauma and POTS. I had a disc removed (L4 or 5) when I was 17 (1974). I was finally diagnosed with POTS two years ago. After reading your posts, I realize that I have had symptoms since then. Without meds, when I stand, my heart rate rises as if I was jogging. It is much easier for me to walk than stand in place. I have found that the meds have greatly helped: midodrine, nadolol and florinef.

Right now, my internist and I treat each change in symptoms as they arise and try different things until there's improvement. Unfortunately, because of depression, POTS and a bit of laziness (ok, maybe a tad more than a bit...), I have let myself get terribly out of shape. I spend summers in Maine and try to swim every day (native Mainers look at me like I'm crazy). Hopefully, I can get myself motivated to start moving because the deconditioning makes everything harder.

If you can find a pool, you might give swimming or even just moving in the water, a try. It's the one place where I feel great. Take care-

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No end date here but just a whole lot of positive thinking! I've had POTS for 2 years and have had to greatly alter my life! There are good days and bad days. I"ve scheduled in naps, swallowed my pride and joined a geriatric cardiac rehab group, broke down and bought a shower chair, advised my kids I will not run unless being chased by a bear. Why won't your doctor share his criteria you didn't meet? Did he explain? Odd! My life changed overnight as well. I sure am thankful though for what I can still do. I'm thankful I can get out of bed, thankful I can still work out some (recumbant bikes are great a little afraid of pools due to the fainting), thankful I can still take a shower, Thankful I can still care for my kids! It took me some depressed times to get to this point but I still plan on working toward the health I want. For now I'm just taking it day by day and enjoying my life!! Hope you find some answers and someone who can help with your treatment plan.

Brye

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