SarahA33

Hi Kelly and welcome to dinet, You mentioned a high ferritin level, I'm guessing your hemoglobin/iron is normal? I'd suggest having your TIBC and hematocrit checked if you haven't already, also maybe it could be helpful to bring in a hematologist even just for a consult. Oh, also is your vitamin d level been checked recently.. That can also cause ferritin levels to go up and down. I'm battling unexplained anemia, high wbc, and elevated platelets, among some other things. It is really scary when your blood work comes back with abnormalities, I'm wishing you the best of luck. Sounds like your primary is headed in the right direction with the tilt, a heart rate monitor might be useful too especially if your feeling palpitations. That way you can record an episode. Sarah

Hi there, thank you for posting this!

Hi Friday, I've had a situation in the past where my doctor told me to contact him but his staff made it almost impossible, so at my next appointment with him I told him about the challenges I was having and he was totally unaware of it. I'm not sure if this is the issue but it may not hurt to mention it. It's so frustrating to try to talk with your doctor and feel like your getting the run around from staff. Not a good look either. Have you been on other agents besides the Prozosin? I was on it for a really short time when they thought I had a pheochromocytoma, but taken off it right away when I was diagnosed with POTS because I was told that this medication could actually worsen my condition specifically.. Every case is different though, did it help your nightmares? I think it's more similar to Clonidine... I know that can aid in some people's sleep, however, I'm not familiar with it helping with nightmares.

Hi Jacquie, I've taken verapamil for bouts of SVT and was on it for tachycardia and bp years ago. You may want to talk to your cardiologist about a med called Ivabradine, (Corlanor). I was prescribed it for IST, so I'm not sure about SVT... But, it doesn't affect my BP, just works on rate control by targeting the sinus node directly. http://heartdisease.about.com/od/womenheartdisease/fl/Ivabradine-for-Inappropriate-Sinus-Tachycardia-IST.htm Wishing you best of luck, Sarah

Hi Sue, sorry that you had a disappointing appointment. I am wishing you the best.

Chrissy, that's great news! a 10 year battle that you can now move forward from..

Dizzygirls, another concern for florinef + nsaids could be hypertension. When I was on Florinef and Naproxen (Rx Nsaid) my doctors were always concerned about that also. I'd reach out to doctor and see what he has in place for pain control.

Hi RustyAnn, Here is a link to a NP, Debbie Turner in Memphis: http://www.memphisdailynews.com/editorial/ArticleEmail.aspx?id=47427 Also, Dr. Ronald Leppanen is in Knoxville. Best of luck to you, Sarah

Hey Mikey, You may find this thread helpful:http://forums.dinet.org/index.php?/topic/26735-severe-insomnia-and-my-belated-intro/ Do you get tired at all throughout the day? Lack of sleep is a terrible thing to have to go through. It will get better. It seems like you have a supportive significant other which is really helpful. Have you seen a sleep doctor or had sleep study yet? Sorry if I've missed it in another post.

Hi Mystery, have you tried Dr. James Russell in Ann Arbor, MI? I know some previous members from MI end up going to OH at either the Cleveland Clinic or University of Toledo to see Dr. Grubb. Wish I could help more.. Also, could you please e-mail us the names of the physicians that you believe are no longer in practice from the physician list? PhysicianList@dinet.org Thanks in advance! Take care, Sarah

Hi JenG, Welcome to the forum! I think what your feeling is really common, you mentioned above going through a lot of GI tests. I went through a lot of testing also prior to my tilt table, so I think it's normal for us to expect testing to not lead us to answers despite how symptomatic we may be. The criteria for POTS is having a HR greater than 120 BPM or an increase of 30 BPM within 10 minutes of standing. You mentioned #'s that exceed that in a 2 minute range, so in my opinion the tilt table test is definitely a good idea. Here is an article that Dr. Grubb wrote, a POTS expert, that explains it from a patient perspective http://circ.ahajournals.org/content/118/3/e61.long I know how your feeling, it is difficult to not be taken seriously when you aren't feeling well and are trying to find answers. Don't give up! Sarah

Hi p8d, Did your doctor get your standing catecholamine levels during your tilt? Like Katie said, Florinef increases your BP. It expands your blood volume by retaining sodium in your kidneys. How are your pressures today? Sorry you aren't feeling well, you cant seem to catch a break lately.

Welcome to DINET, Samip28! It took me years to get correctly diagnosed also. At first I felt relief, then uncertainty, anger, denial, etc. It took me a while to accept it and even understand what POTS was. My fiance and my family tried their best to understand, but the doctors didn't even have all the answers so it made it harder for everyone else I think. I did the same thing as you did, became strong for everyone else.. I realized when I found this site that I wasn't going through this alone, and suddenly my battle became just a little easier. Now that you have a diagnosis you can start taking steps forward, and we have all taken 1 step forward and 2 steps back many times. There are others who understand what your going through. I'm glad you were able to find our forum. Sarah

Hello everyone! Welcome.

Hi Lewis, Have you had a GI doctor complete an endoscopy or a barium swallow?

Hi Guvna2004, glad that you found us again! Sorry to hear that you are still experiencing the bouts of PACs and PVCs, however, it is a relief to know they are benign! Welcome back

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Hi Kris, I'm always pulling for you, just wanted to let you know that! I know exactly how difficult the sweating, goosebumps, layering, too much layering, etc. is to control. It's really exhausting, and I'm sorry that it's limiting you right now. My NE levels are pretty high, and what I've found most useful especially is Propranolol, Clonidine and Ativan as a combination. This combination isn't for everyone, and it took a lot of time to find the right dosing, but it's been so helpful. Together they block as much of the adrenaline as they can. I'm not sure what your BP looks like these days, so that might be a challenge if it's on the lower end. Have you ever tried the Clonidine patch? When your primary does get in touch with you that may be something you could talk with him about as it could provide a continuous release in your system.. I'm so sorry that you are having a difficult time right now. I remember you were one of the first people I identified with when I joined this site because we shared so many of the same physical symptoms and you were so kind to me. I've been able to start getting better, slowly but surely, and I think the same is possible for you. I had to get to the Cleveland Clinic and find the right doctors and medications for me. Would you consider going back to Mayo? Thinking of you, Sarah

Sorry to hear that you are going through all this Mystery. I went through the same things as Katie and Katherine described as well. They suspected Parkinson's at one point because when my anxiety peaks I have a noticeable tremor, as well as the autonomic dysfunction. It had to be ruled out so we could move onto other things. Wishing you the best, Sarah

Hang in there dancer. This was a very emotional time for me as well, it got better though. We're here to offer support and to let you know that you aren't alone in feeling like this. Do you have a follow up appointment with your doctor coming up soon?

Hi Dancer, It took me about 2 weeks before I felt back to my normal feeling if I remember correctly. Back then was a difficult time though as I wasn't really able to get out of bed, IV fluids were most helpful for me as well as compression stockings. I know I feel really symptomatic after pushing myself through certain activities and long days, so it would make sense that a tilt table test could do that to the extreme. I'm sorry you aren't feeling well, I know you've got a physically demanding job also. I hope that with each new day you start to feel better! Sarah

Hi Chuckz, Welcome to the forum! Here is a link from our main website for NCS Treatment that you may find interesting: http://www.dinet.org/index.php/information-resources/ncs/ncs-links The flu feeling is terrible, I share in your struggle. I'm glad that the midodrine and fludro is at least helping so that you have some good days, that's great. I appreciate my good days also, just wish I could ditch the brain fog, among 100 other things, lol. I have also have eyesight symptoms, mine is blurred vision at times, which can be a symptom of autonomic dysfunction, but I would still recommend getting it checked out by an optometrist/ophthalmologist if you haven't already. Take care, Sarah

These were my results "Reduction in left distal leg but elsewhere were normal. This could reflect a focal post ganglionic sympathetic sudomotor abnormality but not be typical for generalized small fiber neuropathy ." You might find this helpful beachcomber: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046462/

Hi P8d, I have a similar situation with having to take a PRN dose of meds for high BP, but mine is of Clonidine if my BP goes over 180/110 and also have the diagnosis of a hyper component. I have orthostatic hypertension. I saw you mentioned in your title that your BP is too low for a beta blocker, do you mean low for you typically? I usually run higher, so when my BP is around 110-100 systolic I feel really symptomatic. I wanted to also share with you that I've been on Ativan (another benzodiazepine) to help block catecholamine production (norepinephrine/Epinephrine levels). http://www.ncbi.nlm.nih.gov/pubmed/4014019 There's been past discussions on these also if youd like to search. While that's been helpful, Propranolol (beta blocker) has been the most helpful for me with the hyper component, as well as clonidine.

Interesting.. didn't know that either! Thanks Katie Seattlepotsy, how do you find Benadryl helpful? I have generalized epilepsy, now very well controlled w/ Trokendi XR. I also have migraines and have found IV Benadryl really beneficial when getting migraine treatments.