Psalm 23

Hi Sarah, It took about 8 months to work up from 5 minutes to 30 minutes. I'm sorry to say that I still struggle with it in spite of it being a very slow flat surfaced walk. I have tried increasing the time to 45 minutes but the recovery time afterward is too long and I just feel awful. I tire very easily in general and require frequent rest periods between everything I do.Tachycardia is no longer an issue for me as I am on so many medications that restrain my heart rate. That's wonderful that you were able to connect with Dr. Joyner and receive some exercise direction that has been so helpful for you. I would love any information you can share with me. That's very kind of you. I have been thinking getting a recumbent bike would be a good idea. Maybe that's what I need to move forward. My main problems with walking are shortness of breath, leg heaviness and things along that line. Dizziness is usually not a problem unless I am motionless. I do a lot of shifting back and forth if I get stuck standing for very long. I am sure I always appear to other as if I need to use the little girls room. Lol. I can totally relate to your stair dilemma. Even though my tachycardia is restrained my heart still feels as if it is going to burst and the shortness of breath that goes with it is suffocating. I'm sorry you have to deal with stairs in your work situation. I wouldn't want to have to worry about being stuck in an elevator though either. In regards to medications I am taking; Plaquenil 300 mg daily, Mestinon 60mg Tid, Clonidine 0.1mg Bid, Propranalol 5 mg Bid, Neurontin 600 mg Tid Amazingly for me the medications and treatment that were initially recommended by Dr. Goodman were spot on and have proven to be very helpful. Some of the medications I had been on before were all wrong. My Cardiologist here knew just enough about POTS to diagnose me in 2006 but didn't prescribe anything useful and that just continued until my POTS symptoms really starting worsening and finally in 2011 it was recommended I see Dr. Goodman. I guess I was spared a lot of the medication trial and error that others like yourself have had to endure. I'm so sorry you had to go through that. I cant imagine how frustrating and scary that must be. Of course things could change for me over time. The other two possible medications to add to my list were Florinef and Midodrine but there was a concern over a resultant persistent hypertension so they remain on hold. It sounds like you have been through such a lot of trauma in your young life. What scary things to be evaluated for. I'm thankful that great care is being exercised with you if a new medication is added. Also wanted to add that I went gluten free about 3 months ago and have found it to be immensely helpful in terms of pain reduction and abdominal pain and bloating. If you skip to the end of my profile you will find the rest of my dietary guidelines and other helps. That's been my area of trial and error for years. I have been contemplating going completely plant based but have not quite gone there yet. I take 9 grams salt and 2.5 liters of fluid daily. Thanks for your sharing Sarah and it is so nice to feel not alone in this as well. Janet

I have zero tolerance for alcohol. Even a small amount makes me deathly ill. Up until about 8 years ago I would enjoy an occasional beer or glass of wine without any ill effect then almost overnight everything changed but then life as I knew it also changed. Janet

Suthrngal, I was prescribed amitriptyline 10mg several years ago for sleep and pain. It is a tricyclic antidepressent as is nortryptaline. I found it to be extremely helpful but when I went to Mayo I had to be off of it for at least 48 hours prior to the qsart. I was found to have a sweating impairment so I was told by the Neuro that I could no longer take it as it is an anticholinergic drug and as such interfers with ones ability to sweat and can worsen pots symptoms for some. We are all so different though. Your doctor must think it will be helpful in your situation. I hope this helps. Janet

Sarah, you're right an extreme of anything in either direction would be very frustrating. I was assessed for sleep apnea about 21 months ago when I was at Mayo but that test was negative. Thanks for suggesting sleep apnea as a possibility though. . The funny thing about the gabapentin was that it was originally prescribed for shingles pain back in 2006. Unfortunately after shingles I was left with episodes of postherpatic neuralgia and fibromyalgia. For a while I was off of everything then severe pain problems resurfaced and my Rhematologist wanted me to try all the new stuff so I tried Saevella, Cymbalta, Lyrica and then an oldie Zoloft. I could not tolerate any of them so back to the Gabapentin. One unexpected benefit though to being back on Gabapentin was a renewed ability to sleep for longer periods of time but only at a dose higher then I had previously taken. I don't think that pain was the reason for waking so frequently I'm thinking more along the lines of NE surges. Of course I don't really know but I am thankful for the improvement. How wonderful that you have doctors at home that have been able to help you and that you are moving forward. Hopefully you wont require the services at Mayo or Vanderbilt but it is reassuring to know they are there if needed. You're right in that traveling is a big consideration. I live in CA so I went to Mayo,AZ. I saw Dr. Goodman ( Neurologist ) as well as many other doctors. They are amazingly thorough there. In regards to reconditioning, the ultimate recommended goal was 30-45 minutes of walking or recumbent bike daily and exercises to strengthen lower limbs and abdominal muscles. At this point I am able to walk about 30 minutes 5 days a week unless I am going through a set back period. I walk slowly and on a flat surface. I have a huge problem with inclines and stairs but I'm hoping that will change. I try to do the muscle exercises also 5 days a week but I'm afraid I forget them sometimes. That's great that you can tolerate some time on the recumbent bike. I'm sure that works one harder then just flat walking. Do you think you would be able to walk more easily then use the bike ? I have often wondered about using one those bikes. I hope you find something that helps with your sleep and continue on in your forward motion. Janet

Hi all. You can add me to the HyperPots list as well. I have been assessed for a pheo twice. My b/p is very labile 80s/50s - 200/110. Until about a year ago I was up every two hours at night but after an increased dose of gabapentin I began sleeping 7 hours. I still battle fatigue though in spite of sleeping for longer unbroken stretches. I guess the quality of the sleep is poor as I have read about with some POTS, CFS and Fibro patients. I would sure like to find a way to increase my energy level. I'm still working on that. I'm a huge Mayo fan as well. Janet

Hanice I am so sorry you are going through this. I hope someone else is driving you. I'm afraid I forget that a lot of people do not have assess to a POTS specialist. If you can print out recent POTS articles to bring to your apt. that would be helpful. That would educate and help guide your doctor in making decisions regarding your care. Write out questions you have for him. I have heard others on this forum mention that some of the POTS specialists out there will accept phone calls from other doctors of patients not their own and give them advice. Try to remember if you start feeling panicky stop and think about your breathing. Think nice slow deep breathing. Think positive thoughts like your doctor is going to help you. Sit down when you start to feel the need to and close your eyes. Picture yourself in a relaxing place. A garden perhaps. Hydrate really well before you go. Stay away from any beverages that are stimulating.That will only make your anxiety worse. Again I hope someone else is driving you to your apt. Invite a friend or family member that has a calming effect on you. Keep us posted on how your apt. goes. Janet

Kayjay, I'm sorry I realized you did have fibro listed as one of your diagnoses. I need to read more carefully next time. I have the hand aching as well but I do play the piano and that aggravates a lot of things but it's hard to completely give up on enjoyable activities. Calling Mayo sounds like a really good idea. The phone support they give is wonderful. Yes. Considering your new symptoms I would wonder about my qsart results. Mine showed impaired sweating in distal extremities which was one of the reasons I was leaning towards small fiber neuropathy as a possible diagnosis. Because of an insurance problem it will be a while before I can go back to Mayo. I would love to hear about what your doctor says about your burning hands/feet problem. E Soskis, thanks for sharing your Raynauds symptoms as it got me thinking about connections between Raynauds and SFN. I found an article I thought was interesting regarding just that. There seemed to be several other articles discussing that connection as well. I also realized that with an AAG diagnosis you would have an abnormal qsart. http://www.ncbi.nlm.nih.gov/pubmed/20035332 Janet

Hi Hanice. Hopefully this increase in severity of symptoms is only short term as it seems to be a common occurrence following an acute episode of something. Usually it's the flu or something more along those lines but maybe your chocolate/nutmeg reaction would also count as an acute stresser. The last time I became ill it caused a severe increase in my pots symptoms for weeks afterward. I called my pots neuro about it and was told it was common to have a long period of recovery. It sounds as if you need a follow up apt. with your pots specialist though if things don't improve for you in the near future because you are going to need a new management plan. We share many of the same symptoms except that I finally reached a point where I just could not get by with out being on medication. Since you want to try and stay away from pharmacological measures there are still non pharmacological measures you could initiate like compression garments if you haven't already and salt and fluid loading if that is something that is recommended by your doctor. Also as soon as you are able it's really important to initiate some kind of exercise plan even if you don't feel like it ( I never do ). In regards to feelings of anxiety, slow deep breathing and guided imagery are helpful. Interestingly the same recommendations made in the sugar article above. Chamomile tea can also be helpful. Keeping snacks with you for those times when you are over taken with hunger feelings helps as well and of course correcting any lab abnormalities. I'm sorry you have been feeling so poorly. I hope you start feeling better soon Janet.

What have you all found for any kind of pain management ? I have found neurontin, lidoderm patches stuck on the bottoms of my feet and else where and elevating my feet seems to help which leads me to believe that my pain is most likely neuropathic. Burning hands and feet I guess can also be a fibro symptom and since 50% of fibro patients are thought to have SFN that comes back to a possible neuropathic basis for the pain. I suppose Raynauds could still be a possible culprit but I didnt realize that Raynauds could cause a type of pain that I would associate more with SFN. Although now that I think of it couldnt Raynauds cause SFN because of blood vessel spasms and restricted flow ? Besides the burning I have the tinging, stabbing, aching etc.as well. Yes. It is very annoying. Do any of you also have a fibro diagnosis ? How about abnormal qsart results ?

Yes. I have a problem with burning in my feet that started about a year ago and has steadily worsened and moved upward. The burning in my hands just started recently. I also have an increasing problem with discoloration in my feet and legs ( red/blue/purple mottling ) which seems to be related to a dependency position. I do have a diagnosis of raynauds and exposure to cold will cause my hands and feet to change color but this more recent problem is entirely different. I am wondering if this dependent discoloration is the result of a nitric oxide abnormality in the skin as Dr. Raj proposes as a possibility for some POTS patients. Do you have discoloration to your skin along with the burning pain ? I have been thinking the burning foot problem may be small fiber neuropathy but do not have that diagnosis confirmed. My Rheumatologist believes that to be the case. I have also wondered about erythermyalgia as a possibility but no one has mentioned that one. This is all very disconcerting. I don't believe I will get any answers to this until I can return to Mayo. My doctors here are really not very familiar with these sorts of problems. I'm sorry you are experiencing these problems as well. Janet

I lost the ability to work 8 years ago. For many years prior to that I worked part time but had to call in sick a lot towards the end.

Hmm. I noticed there are a lot of other RNs here with POTS. I am an RN who after many years of battling increasing symptoms and severity of symptoms lost the ability to work back in 2005. I am currently on disability.

Hi Hanice. For now I just wanted to wish you a Happy Birthday. I got on my computer too late to concentrate on your history and symptoms but I will read over everything tomorrow and add in any suggestions I think might be helpful to you. Janet

Hi Issie, Thank you so much for resurrecting this interview. The information presented is quite compelling and certainly gives one much to think about. I need to read over it again to better process it. At this point I have been unknowingly doing some of what is recommended for protozoa treatment. Particularly with regard to a low fat diet recommendation that is the only kind of diet I can tolerate without getting deathly ill. I look forward to new information up coming. I'm so glad you are still seeing some positive improvements with the course you are on. Janet t

Jackie, Thank you so much for all the effort, time and energy you are expending in sharing your experience with all of us. I hope it proves successful for you. Your daughter is very cute. The separation must be terribly difficult. Looking forward to hearing about the rest of the journey. Janet

I also experience a strange metallic taste sometimes. In fact my husband has commented on my breath having a metallic odor to it at times. He mentioned it to one of the specialists I was referred to back in 2005 but nothing came of it. I also smell smoke sometimes when no one else does. I have no idea what any of it means. I guess I don't think about it much anymore. I don't mention it to any of the various doctors I see as they already have little understanding of my other problems.They see me as something of an oddity as it is Lol. I do not have sleep apnea or seizures. Janet

Wow, that's a lot of medications for shingles. Gabapentin is the same as neurontin. It's specific for alleviating nerve pain and was what got me through the excruciating shingles pain. It does carry with it the potential for significant side effects as do all the other medications so you need to be aware of what to watch for. Famvir is an antiviral and being on some kind of antiviral is necessary. I am wondering if that is what is now prescribed instead of Acyclovir which was the one I took for shingles. Prednisone is a steroid so your doctor must be concerned about reducing inflammation. That may be something new that is being ordered for shingles or your doctor has other concerns. I have been on prednisone a number of times. Make sure you take it with food. If taken for short periods of time it is usually not a problem unless of course you are allergic to it. Promethazine is ordered for a number of different reasons so I'm not sure what your doctors concern was in ordering that drug? Was it ordered on a take as needed basis ? Vicodin is another pain med option but it is not specific for helping nerve pain. Those are a lot of medications to start taking at the same time and you have a valid concern about not being able to discern which one if any could potentially cause you an allergic reaction. For any of the medications that are ordered to take on an as needed basis I would put off taking them until after you have taken the most necessary medications first that way if you experience an allergic reaction to one of the medications prescribed it will at least reduce the number of possible offenders and help you determine which one it was. Take care, Janet

Shona, oh my goodness. I am so sorry. My heart totally goes out to you. I had shingles in 2006 so I know how painful it is. I was prescribed acyclovir and neurontin which is specific for helping nerve pain. I don't tolerate vicodin either. I hope you recover quickly. Janet

Hi Kat, Thank you so much for elaborating and sharing your tremor/symptom history, progression and diagnosis. I'm sorry you are having to deal with this. It's all such an immense frustration and as with other symptoms I find it helpful to be able to understand what is behind its presence and what might alleviate or eliminate it. My situation seemed to have occurred in reverse of yours. My POTS symptoms started many years before my tremor did. I have seen the word tremulousness used in association with POTS a lot so I guess it is a pretty common symptom for many. Yes, I believe as well that OT and dysautonomia tremors are most likely related in some way. I hope you have discovered a treatment plan that is helpful for you. Janet

Suthrngal , the current started about 2 years ago and has progressively worsened. The tremor started 9 years ago and is anything but tiny. It developed two weeks into a very strange spontaneous development of severe blistering, swelling and lesions between the fingers and all over my right hand.The first neurologist I saw all those years back asked me how much alcohol I drank which was none. I think the tremor was reflective of a worsening POTS symptom. The hand incident may not be related to the tremor except that for me an acute episode of anything left me with residual problems. Clonidine and Propranalol keep the tremor as well as other POTS symptoms somewhat under control. I have not felt as if taking those medications has any effect on the current feeling but I could be wrong in that if I were not taking those medications the current feeling might be worse. My NE levels both supine and standing are very high so that would account for a number of symptoms. I would say small fiber neuropathy is typically treated with neurontin, lyrica, elavil, different SNRIs and well as other medications. For myself I don't yet have a confirmed diagnosis but my Rheumotologist is convinced of it. I am on neurontin which is helpful. I was on lyrica for 18 months but had terrible side effects. I also use lidoderm patches on my feet which is a bit unorthodox but is very helpful. When someone is diagnosed with SFN as with Autonomic Neuropathy one of the most important things to be done first is to try and determine the cause and treat that if possible. If you search past SFN posts you will find links and more information. Janet

I would absolutely insist on extra preprocedure and postprocedure IV fluids. Don't let your GI doc dismiss your special needs. Tell him not administering those extra fluids would be detrimental to your health and could make for a very problematic situation for him and the staff taking care of you. I had a Colonoscopy and EGD in 2010 and I told the GI doc I needed extra fluids and I was prone to extreme dizziness, nausea and vomiting post procedures. He just ignored me and it turned out to be one of the worst experiences of my life. I changed to a different Gastroenterologist who was somewhat familiar with POTS and actually listened to me. Last year I needed another EGD but this time it was an entirely different experience because I told him what happened the last time so this time I was well hydrated and given a small dose of IV Reglan preprocedure. Most Gastroenterologists and nurses are probably not familiar with POTS so as badhbt has suggested bringing with you a Dinet brochure is a great idea. And no you are definitely not making too much of this. Hold your ground on this one. Janet

Kat I am also wondering if it is another newish POTS symptom for me. I have not heard the term Orthostatic Tremor used. Are you affected by it every time you are upright or is it an intermittent problem ? I wonder has it been associated with a high NE level ? Did your Mayo doc offer up any explanation for it ? In addition to my intermittent buzzing/vibrating problem which can occur in any position I have an ever present jitteriness/tremor that is different than the other problem. The jitteryness/tremor problem has been controlled to a degree by clonidine but an orthostatic position maintained for very long will cause those symptoms to easily return. I have many questions to ask at my next appointment.

Suthrngal I can't really advise one way or the other but I can say that for myself Dr. Goodman was immensely helpful and I would highly recommend him. I'm not sure if as a new patient you can schedule an appointment directly with him. I was referred to him by a local Neurologist. Dr. Goodman then referred me to an Internist in consultative medicine and she then referred me to a number of other specialists and ordered a huge number of diagnostic tests. I think that is pretty much the norm for an out of state patient. As a return patient though one can call Neurology dept. directly and schedule an appointment which is what I will do this time. Alex that's wonderful that your buzzing/vibrating problem has disappeared. What a relief it must be. Hopefully you wont be troubled with it again. Janet

Suthrngal. Dr. Goodman is a neurologist at Mayo, AZ. I saw him in 2011 for pots confirmation ( I had been diagnosed with pots originally by my cardiologist in 2006 ) and to be evaluated for autonomic neuropathy amongst other things. Dr. Goodman was spot on with his recommendations on how best to treat my condition. At that time I did not really have typical symptoms of small fiber neuropathy ( severe burning etc in feet/legs ) so that was not an issue as it is now. I didnt ask about the intermittent vibration/buzzing as it was not an issue back then either and there were too many other things to discuss. I was at Mayo 10 days, saw 6 different doctors, had more diagnostic tests then I care to remember but it was well worth it in the end. At this point I don't even want to guess at what I think any of this buzzing/vibrating might relate to or correlate with. In regards to diagnostic testing for MCAS I suppose ordering the labs that are referenced in the MCAS article in the Dysautonomia Newsletter and referral to an immunologist maybe. I'm not exactly sure. Other forum members that are Dr. Goodman patients have posted about going back and having MCAS concerns addressed by him. Thanks for your prayers Suthrngal. I will keep you in mine. Janet

Looneymom, thank you so much for posting an update on your son. I had been wondering how he was doing. I'm so glad to hear that the autoimmune dysautonomia evaluation test came back negative.That must have been a huge relief. It does sound like seeing an immunologist is the best next step though as you are still left with unanswered questions about possible immune system involvement. I'm so glad to hear that your sons b/p is staying up and his heart rate has been better. I'm sorry to hear though that sleep and tremors are still such a problem. So distressing I know. I hope the medication adjustment helps. Bless you for being such a wonderful mom and caring for your son so lovingly. Janet