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Quick Updates And New Info From The Cleveland Clinic!


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Hello there my dinet friends,

I'll make this as quick and to the point as possible.. my doctor's who originally diagnosed my pots and treated it for years are theraputically and diagnostically burnt out. They need help from somewhere like Mayo or Cleveland, as since Cleveland is less than 4 hours away and they already have my records in other specialities, I have set an appointment with Dr. Jaegar. They need guidance and access to testing and facilities that we just dont have locally. Am i correct from what I've been told and read in other posts that your dr.at cc or mayo will write a letter with reccomendations for local follow up care and at times will communicate with your local docs if neede at times?

I just don;t know what to do anymore. I hope that these doctors in cleveland will be able to help me. I need someone to cut me a break... I'm we all could use one! Hoping everyone is doing well. Time to go back to something that requires less thinking -- online shopping for fall boots :D

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Ugh! Sorry Sarah to hear that things continue to be so challenging for you. It's about time for you to get a break I think.

I'm guessing that with a calcium that high they have ruled out hyperparathyroidism already? Have you seen an endocrinologist yet?

The 2 QSART procedures I had were relatively easy. They place electrodes on your skin that deliver a little stinging sensation for a brief period of time. I know some people have described them as being more painful but for most people I think it's not bad. Can't remember exactly how long it lasts but it's less than 10-15 minutes start to finish I think.

The cardio autonomic reflex testing I had done at CC was in 2010 so they may have changed things since then but at that time again it wasn't bad. If I'm remembering right it was things like the valsalva test (blowing against resistance) and paced breathing and one other thing I can't remember right now. At that time they were also doing the "hand in cold water test" but I didn't have to do that one. I don't remember these tests as being horrible. Certainly nothing like the TTT. There weren't IVs or meds given for them.

The hemodynamic test had IV meds being pushed if I remember correctly.

Between being really ill after the TTT and the 26 vials of blood they took and time that's elapsed since then, I'm afraid I've forgotten a lot of what happened there but overall I don't recall it being too horrible....other than the 2 TTTs (the first one and the one for the catecholamines), With your Hgb of 9 and Hct of 32, hopefully they'll be really judicious in what they draw in the way of labs. Good grief!

Good luck with the Topomax. Hope it gives you some relief. For some reason I thought you had tried that previously?

Are you seeing a neurologist while you're there? I think Dr. Shields is the one with a lot of POTS knowledge there. Wonder if he might be helpful to get some input from as well.

Hang in there! Sending major hugs your way!

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My qsart had me in tears. I would have rather gotten another tattoo than go through that again. My autonomic tilt was kinda freaky, as at one point I had no blood pressure whatsoever according to my records, and then it spiked extremely high before it started falling slowly. I don't do well with feeling my heartbeat, so once we hit 120, I was miserable and sick. The guy who drive me for this day of testing was a great friend of mine and had salty Chinese food and broth waiting on me, because I was so off my meds, I could barely function.

I send lots of hugs!

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Hi Sarah,

I try not look at tests as scary....I try to view them as an opportunity for my doctors to see my defective body in action. Lol! It helps me stay calm even though I know I won't feel well for a bit. I figure I'm likely to feel bad at home anyway, so it's nothing I haven't experienced before, it's just in a setting where the docs can monitor what is happening when I don't feel well.

I was also thinking that it might be worth consulting with a hematologist to interpret these very unique lab results. They may have a suggestion as to how these changes in your blood have come about.

Good luck on your trip.

Katie

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Hi Sarah,

Is that your fasting glucose or was that after a meal?

Correcting the anemia and potassium would probably help you feel better; I'm not sure about hyperpots but low ferritin (iron storage) is associated with autonomic dysfunction so that might be something to work on. I think there was a post (here? somewhere else?) about a woman with low ferritin who had a big improvement in POTS symptoms after addressing her iron issue.

The hypercalcemia is also something treatable! I know someone who had that and she ended up having surgery and her numbers are much better.

I haven't had the tests so can't offer advice but can wish you the best of luck.

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I have had all of these tests and saw Dr. Jaegar last summer. He is very knowledgable about dysautonomia and hopefully he can help you. The QSART was no big deal for me. Just a burning/stinging sensation where the electrodes are. It was bearable for me and I have a low pain tolerance. I only had to do the first part of the reflex test. Just breathing into a tube with a heart monitor, breathing monitor, and beat by beat blood pressure monitor. The results I got from that part of the test did not indicate that I needed to do the second part of sticking your hand in ice water or getting the iv meds. For me the tilt table test and blood volume were much worse than these ones.

The hypercalcemia is treatable and treating the anemia will also make you feel better. A hgb of 9 is pretty low considering the hospital i work at gives blood transfusions to people below 8. Was that your fasting glucose at 139 or did you eat before that? If that's fasting I would be concerned about diabetes.

Let me know if you have any other questions about Dr. Jaegar or the tests you are having. Good luck at your appointment and let us know how it goes!

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Hi Sarah! I guess I am lucky because I get to see Dr. Jaeger every three months. He is very nice. The first time I saw him he seemed very "official" but I have gotten to k ow him better over about a year or so. My advice for your visit with him is to try your best to have your questions written out so that you don't forget anything. He is very thorough re testing. I also just saw Dr. Shields (neurologist) there and he was also thorough. Dr. jaeger explained to me that he investigates everything re the vascular area of Dysautonomia and your neurologist investigates the neurological side of it. Can you get an appt. with Dr. Shields set up as well? He tested me for things that other neurologists didn't think of and I feel that with the both of them, I am in good hands.

The QSart test wasn't bad and just felt like mini shocks to me. In fact, Dr. jaeger laughed because he said it took them forever to try to get my big toe to sweat. Lol. Valsalva test is just a pain because you have to breathe against some pressure but it certainly wasn't terribly uncomfortable. The gal that usually runs these tests is named Narkeetah and she is very kind. The hemodynamics testing wasn't bad at all and you basically lay there while they do all the work. Because you are getting all this done in a short period of time and because you are currently not feeling well, I am assuming you will be very tired.

Hang in there! Please try to get a consult with dr. Shields if possible. I am hoping this may provide you with a full range of information!

By the way, there is shopping and a grand piano in that bldg. too as well as nice artwork!

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Another thought just crossed my mind....if it were me, I would ask Dr. jaeger if it is safe for you to have a TTT with your current bloodwork results. Maybe this has already been considered? Just a thought...

Also, I know you have experienced the "white coat anxiety" that I have mentioned in previous postings or at least understand it. A nurse named Chad sometimes helps Dr. jaeger and the first time I saw him (before Dr. Jaeger came in), I said I was embarrassed by the long list of symptoms I had. He said that just about everyone they see there has the long list and that I was "safe here". I remember that I had a long deep breath after he said that and I was so grateful and so much more at ease.

I pray that your experience is a good one.

If you want, I will come down there on Friday and sing you a song by the piano. Ha! Maybe a Monty Python "Always look on the Bright Side of Life" diddy.

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Wow, your calcium is high! And calcium most definitely can cause seizures(not saying yours are caused by it, but....). You need to see an endocrinologist for that, but in the meantime, they can order an ionized calcium level to see what your free calcium is(it is more telling of what is going around your body). If you are super-dehydrated, which some of us easily get, it can cause higher calcium levels. An ionized calcium, I think, corrects for this. Also, they can add on a PTH level to see if your are hyperparathyroid. That would all be a good starting point to see what is really going on with that calcium. Plus, as others mentioned, it is treatable through surgery if you're found to have an enlarged parathyroid gland.

Good luck on the other testing. I'm with Katybug on this...it is time for the health professionals to see what your body does.

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Hi Sara

Sound like you are in good hands. Tyler just had some blood work and his looks good except for his vitamin D. He was taking fish oil with it and our doctor said not to take it with his D vitamin. So he takes fish oil another time. Tyler also has trouble with dopamine levels. His were not measurable either. Hang in there and keep us posted.

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Hi Sarah, i can't be much help to you as my tests have mostly been different from the ones they are putting you through. And 7 can't remember anymore what all the blood tests have shown over the years - nothing obvious or I would remember, I think. But the tests I have had have mostly been very bearable. I've had more than a few embarrassing ones -anal probes, anyone? LOL.

I'm going into hospital for 5- 7 days at the end of this month for

More testing and if it is anything like last time it will be a 'walk in the park' . It's surgery which has done me in, in the past.

I hope the topomax helps with migraine as well as the seizures.

This is the first time I've heard about migralepsy - obviously it's the first time the auto correct on my tablet has heard of it too. It wants to write ' migrate psychiatrist'

Please post of any developments and I hope things go smoothly for you.

Blue

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  • 2 weeks later...

Hi everyone,

I'm really sorry for taking so lost to post..I haven't been feeling well, also switching around medications and changing doctors has been challenging. I can't thank you all enough for your responses.

Chaos, hope you are doing well. I appreciate you mentioning hyperparathyroidism.. that was mentioned by one neurologist I saw when the seizures started in February. However, he said with all of the pet scan's, mri's and ct's that I've had that they would have located a tumor if I was to have that. Is he way off?

You've got a good memory! Regarding the topamax, I was on a really small dosage for migraines about a million years ago.. I'm now taking 1,200mg every day. Did you see Dr. Jaeger when you were at the CC?

Becia, Sorry you had such difficult experiences with the autonomic testing. I'm most worried about the tilt.. by far that was the worst test I have ever had. I'm a little concerned that it's the first test of the day and I'll be expected to function throughout the entire day. I was out of commission for such a long time after the last time. Fingers crossed you are having a peaceful weekend!

Hi Katie, I have to agree that the testing is a necessary tool, especially for them to see in person how bad my symptoms can be. I think describing what happens doesnt make quite as much of an impact as actually witnessing it. I really just need help.

Robin, My glucose was fasting.. Hopefully my numbers were all messed up because I had a seizure a few hours earlier..it throws a lot off. Regarding the hemoglobin..I'm taking iron supplements I'll find out what the number is this Wednesday. You mentioned your friend had surgery for her calcium levels, I've never heard of that before.

Krissy, thanks for posting your thoughts on my upcoming appt. I'll send you a PM regarding some questions I have. I've never had the blood volume testing done, sounds like it wasnt pleasant for you. What exactly do they do?

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Hi Raisin! Thank you for the offer to come sing to me, lol! That's very thoughtful of you! I'm glad that the staff were able to put you at ease when you saw them.. that makes such a huge difference. hopefully the testing will be less intimidating after the office visit is over.When it comes to new doctors, I really don't like talking about my symptoms all that much and I often tend to downplay them as I don't want to appear I'm complaining. I definetely need to get the most out of this appointment as possible! Talk soon..thank you for your help!

Sue, That's great advice. Thank you so much! The intersting thing about my calcium levels is that they were never high before the seizures started. They were checked in the ER afer my first seizure and have been elevated since. They arent always 21, but they havent dropped below 12 since February. My epiliptologist doesnt seem to think much of it in relation to that being the cause of the seizures, more of a side effect, if that makes any sense. He explains it so much better than I do.

Hi Rachel!! I hope you and Tyler are doing well and that your new school year has gotten off to a great start. Thx for the support as always

Blue, Hoping you are feeling well.

Sorry to hear you are planning to be admitted.. I hope that they can help you and give you some relief.

Take care everybody, again -- thank you for the support! :rolleyes:

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Robin, My glucose was fasting.. I have to have the 3 hour glucose test when I am at Strong on October 9th. Hopefully my numbers were all messed up because I had a seizure a few hours earlier..it throws a lot off. Regarding the hemoglobin..I'm taking iron supplements and eating a lot of iron rich foods.. I knew Blood transfusions were an option I just hate acknowledging it. I'll find out what the number is this Wednesday. You mentioned your friend had surgery for her calcium levels, I've never heard of that before, do you know any details about it?

Hi Sarah! I hope the glucose was a blip caused by the seizure, good luck with your fasting test. Strong is a good hospital!

The woman I knew (she's a FB acquaintance, so I looked back on her page) had hypercalcemia from parathyroid disease. She ended up have surgery for that, I'm not sure if they removed her entire parathyroid gland or just part of it. But,I'm sure they've probably checked you for that, if your elevated calcium is from the epilepsy than that's of course not an option. I had no idea seizures could mess with metabolism.

I'm wondering if your iron is low because you're absorbing all of that calcium? i think iron injections are another option before transfusion.

Good luck, Sarah. Sending positive thoughts your way. Keep us posted!

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Sarah, has no doctor investigated the high calcium yet? I would ask for a phosphorus, a PTH (parathyroid hormone) and a magnesium. An endocrinologist would be a good doc to go to or your general practitioner could do the lab work and then refer you if needed. Best wishes to you! I hope you get some answers soon!

Edit: Oh, and a vitamin D level also :)

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Yeah feel free to PM me with any questions you have. The blood volume and hemodynamics tests are easy in that all you have to do is lay there. They were done in the same room one right after the other. For the blood volume part, they start an IV and inject you with a radioactive tracer. Then they draw blood at different time intervals. It was unpleasant for me because it is hard to start an IV on me especially when dehydrated from fasting. When they finally did get the IV started, it wasn't a very good one so they had to keep adjusting it and pressing down on it every time they drew anothef vial of blood. They take quite a bit, I stopped counting after 20 vials. For the hemodynamics test, they inject a different radioactive tracer in your IV multiple times. I can't remember how many, maybe 5 injections? They take different sets of images with a gamma camera to see how your blood flows through your body and if you have any pooling. This was unpleasant because they have to inject the tracer quickly and I could feel it from my IV inside my elbow up my arm to my shoulder. Not really painful, just uncomfortable. Let me know if you have any other questions. Don't worry too much, all the tests are bearable, just not very much fun.

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  • 4 weeks later...

Hi all! I've had a pretty terrible month. I've been in bed 4-5 days a week the last month it seems. I just wanted to let you guys know that I went to the Cleveland Clinic to see Dr. Jaeger on Friday 10/17. He was wonderful. . He was kind, down to earth, and gave me a lot of hope. I have some suggestions that he offered before the treatment plan is written.. one medication mentioned was Ivabradine as he also diagnosed with me Inappropriate sinus tachycardia (IST). Also, he recommended a medication called Multaq for my heart rate posibly. Has anyone had any experience with either? I know Ivabradine isnt yet approved in the US

he actually cancelled my tilt after checking my vitals. He said he had no need to repeat the tilt because of vitals.. He is running a ton of blood work to check my levels for all the blood work inconsistencies. . I have the blood volume test and hemodynamic test this morning and he said we will then have more answers regarding my anemia and many other symptoms.

I'm leaving in about a half hour to go back for the tests, and also an appointment with Dr. Browning (pots neuro) and more blood work. This is where I will find out if Mestinon or Provigil can be prescribed or not, as they are neurological medications that Dr. Jaeger refers to the Autonomic Neuro for reccomendations. I also need a great deal of help regarding sleep, so I'm not certain if she'll be able to offer any suggestions with that.

I want to thank you all for your support, I'll check back in when I have some more answers. Hope everybody is doing well -Sarah

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Careful with the mestinon, as one who has seizures also, it's contradicted in us. I'm still trying to give it a chance though, because something has to be better than nothing.

Travel safe!!

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Hi Corina!! I hope everything is going well for you. I'm glad to hear that you've heard success stories regarding the ivabradine. I was hesitant at first, but he said the FDA should have approved it a long time ago and it's safer than the Multaq he also suggessted.

I saw Dr. Browning,one of their autonomic neuro doctor's. She was really great also, I liked her very much. She saw my hemoglobin was at an 8, so she referred me to see a hemotologist/oncologist next, for the lab inconsistencies, she saw the size of my platlets, which are supposed to be 200-400,000 and mine were 900,000. My B12 was 1,171 and normal is 221-600, which is sometimes a marker for hypereosinophilic syndrome. Great. Anyway, I'm still checking mychart, their online patient portal for more results, especially my cat's, metanephrine's, and NE's. I follow up with 2 new specialists they added on. And they will be repeating the blood volume test and hemodynamic tests . I seriously can't believe I went to the #1 cardiac hospital in the United States and I freaked them out.

Becca,

Thanks for the recommendation on the Mestinon, I was already aware as my epileptologist told Cleveland to make the final decision if they felt the risks outweighed the benefits. I'm not too bummed about the Mestinon as Dr. Jaeger and Dr. Browning had a lot of other options they said they'd try. I will have to wait for the epilepsy specialist to weigh in

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Sarah--so sorry you are dealing with so much. I truly hope these specialists will be helpful in sorting out all of these issues/questions and getting you better. Let us know how you are doing.

On a mundane note, I have trouble copying and pasting too. clicking on that little grey box on the top very left of the reply box (sorry I don't know the technical terms I hope this makes sense)--it says "BBCode Mode" when you hover your arrow over it--will allow me to paste.

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I am happy to hear that you feel that you are in the right place.

It sounds like you are having a tough go of it, but you are keeping your spirits up. This is a new beginning.

I have not commented, not being certain what to say. I am following, and am praying that better days are ahead of you.

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gjenson,, any new updates or have any luck speaking to the folks at Vandy?

I will end on this positive note - i met a lot of really kind and intelligent doctors who know what they are doing. Now, I cant speak for everyone, but the staff that I did encounter were helpful and respectful.

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